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ARTICLE STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY

VIEWS: 19 PAGES: 70

									                                                                                TERATOLOGY 66:S59 –S128 (2002)




STATE BIRTH DEFECTS SURVEILLANCE
PROGRAMS DIRECTORY

Updated May 2002
Prepared by the National Center on Birth Defects and Developmental Disabilities, CDC


Acknowledgement: State birth defects program directors provided the information for this directory. Their
names can be found under the “contact” section of each state profile.




Published online in Wiley InterScience (www.interscience.wiley.com).
DOI 10.1002/tera.90012
                                            †
Published 2002 WILEY-LISS, INC.               This article is a US Government
work and, as such, is in the public domain in the United States of America.
S60       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                           Alabama
                            Alabama Birth Defects Surveillance and Prevention Program (ABDSPP)

Program status: Currently collecting data                           prematurity), childhood deaths between 1 and 6, ocular
Start year: 1995                                                    conditions, auditory/hearing conditions, any infant with a
Earliest year of available data: 1998                               codable defect
Organizational location: University                                 Coding: California’s coding system based on BPA
Population covered annually: 8,000 for 1998-2000 data; 18,500
for 2001 data                                                       Data Collected
Statewide: No - Mobile and Baldwin counties for 1998-2000           Infant/fetus: identification information (name, address, date-of-
data; Mobile, Baldwin, Escambia, Monroe, Houston, Coffee,           birth, etc.), demographic information (race/ethnicity, sex, etc.),
                                                                    birth measurements (weight, gestation, Apgars, etc.), tests and
Crenshaw, and Montgomery counties for 2001 data.
                                                                    procedures, infant complications, birth defect diagnostic
Current legislation or rule: none
                                                                    information
Case Definition                                                      Mother: identification information (name, address, date-of-birth,
Outcomes covered: major birth defects and genetic disorders         etc.), demographic information (race/ethnicity, sex, etc.),
                                                                    gravidity/parity, illnesses/conditions, prenatal care, prenatal
Pregnancy outcome: live births (all gestational ages and birth
                                                                    diagnostic information, pregnancy/delivery complications,
weights), fetal deaths—stillbirths, spontaneous abortions, etc.
                                                                    exposures, family history
(less than 20 week gestation, 20 weeks gestation and greater),
                                                                    Father: identification information (name, address, date-of-birth,
elective terminations (less than 20 week gestation, 20 weeks
                                                                    etc.), demographic information (race/ethnicity, sex, etc.),
gestation and greater)
                                                                    illnesses/conditions, exposures, family history
Age: up to one year after delivery
Residence: Mobile and Baldwin counties for 1998-2000 data;          Data Collection Methods and Storage
Mobile, Baldwin, Escambia, Monroe, Houston, Coffee,                 Data collection: printed abstract/report filled out by staff
Crenshaw, and Montgomery counties for 2001 data.                    Database storage/management: MS Access, Epi-Info, Clipper

Surveillance methods                                                Data Analysis
Case ascertainment: active case ascertainment, population based     Data analysis software: Epi-Info, SPSS, Hypercube
Case finding/identification sources:                                  Quality assurance: re-abstraction of cases, double-checking of
Vital records: birth certificates, death certificates, fetal death    assigned codes, comparison/verification between multiple data
certificates                                                         sources, clinical review
Delivery hospitals: chart review, disease index or discharge        Data use and analysis: baseline rates, rates by demographic and
index, obstetrics logs (i.e., labor & delivery), regular nursery    other variables, time trends, needs assessment, service delivery,
logs, ICU/NICU logs or charts, pediatric logs,                      referral, grant proposals, education/public awareness, prevention
postmortem/pathology logs, Congenital Anomaly reporting form        projects
Pediatric & tertiary care hospitals: chart review, disease index
or discharge index, ICU/NICU logs or charts, pediatric logs,        Funding
postmortem/pathology logs, Congenital Anomaly reporting form        Funding source: Other federal funding (non-CDC grant) 80%,
                                                                    University 20%
Other specialty facilities: prenatal diagnostic facilities
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/
                                                                    Other
clinical genetic facilities
                                                                    Web site: www.usouthal.edu/genetics/
                                                                    Procedure manual available: yes
Case Ascertainment
                                                                    Additional information on file: Birth Defects Syndromes fact
Conditions warranting chart review in newborn period: any
                                                                    sheets
chart with a ICD9-CM code 740-759, any chart with a
                                                                    Comments: Site linked to international birth defect information
selected list of ICD9-CM codes outside 740-759, any birth
                                                                    systems.
certificate with a birth defect box checked, all stillborn
infants, all neonatal deaths, all elective abortions, all infants   Contacts
with low APGAR scores, all infants in NICU or special care          Wladimir Wertelecki, MD
nursery, all prenatal diagnosed or suspected cases, 5 minute        Director, Alabama Birth Defects Surveillance and
apgar 7                                                             Prevention Program
Conditions warranting a chart review beyond the newborn             CCCB room 214, 307 University Boulevard
period: facial dysmorphism or abnormal facies, failure to thrive,   Mobile, AL 36688
developmental delay, CNS condition (ie seizure), GI condition       Phone: 251-460-7505
(ie intestinal blockage), GU condition (ie recurrent infections),   Fax: 251-461-1591
cardiovascular condition, all infant deaths (excluding              E-mail: bdprevention@usouthal.edu
                             STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S61

Peg Hilliard, BSN
Coordinator, Alabama Birth Defects Surveillance and Prevention
Program
CCCB 214, 307 University Boulevard
Mobile, AL 36688
Phone: 251-460-7692
Fax: 251-460-7684
E-mail: philliard@usouthal.edu
S62       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                             Alaska
                                               Alaska Birth Defects Registry (ABDR)

Program status: Currently collecting data                            Data Collection Methods and Storage
Start year: 1996                                                     Data collection: printed abstract/report filled out by staff,
Earliest year of available data: 1996                                printed abstract/report submitted by other agencies (hospitals,
Organizational location: Department of Health (Maternal and          etc.), electronic file/report submitted by other agencies
Child Health)                                                        (hospitals, etc.)
Population covered annually: 10,000                                  Database storage/management: MS Access
Statewide: yes
                                                                     Data Analysis
Current legislation or rule: 7 AAC 27.012
                                                                     Data analysis software: Epi-Info, SPSS, SAS, MS Access,
Legislation year enacted: 1996
                                                                     Excel
Case Definition                                                       Quality assurance: validity checks, re-abstraction of cases,
Outcomes covered: ICD-9 Codes 237.7, 243, 255.2, 277, 279,           comparison/verification between multiple data sources, clinical
282, 284.0, 331, 334, 335, 343, 359, 362.74, 740-760, 760.71         review, timeliness
Pregnancy outcome: live births (all gestational ages and birth       Data use and analysis: routine statistical monitoring, baseline
weights), fetal deaths—stillbirths, spontaneous abortions, etc.      rates, rates by demographic and other variables, time trends,
(20 weeks gestation and greater)                                     observed vs expected analyses, epidemiologic studies (using
Age: Birth to age one; Birth to age six for alcohol related birth    only program data), identification of potential cases for other
defects (including fetal alcohol syndrome)                           epidemiologic studies, needs assessment, service delivery, grant
Residence: Alaska residents                                          proposals, education/public awareness, prevention projects

                                                                     Funding
Surveillance methods                                                 Funding source: CDC grant 100%
Case ascertainment: passive case ascertainment, population
based; active case ascertainment for alcohol related birth defects   Other
(including fetal alcohol syndrome)                                   Web site: www.hss.state.ak.us/dph/mcfh/epi/ABDR/default.htm
Case finding/identification sources:                                   Surveillance reports on file: Family Health Dataline
Vital records: birth certificates, fetal death certificates            Procedure manual available: yes
Other state based registries: programs for children with special     Additional information on file: Results of the Alaska Folic
needs, Infant Learning Programs, Genetics Clinics, Specialty         Acid Survey conducted in 1999 and 2000
Clinics (Heart, Cleft Lip/Palate, Neuro developmental), MIMR
                                                                     Contacts
(FIMR), Public Health Nursing
                                                                     Lisa Durham Allen, BA
Delivery hospitals: chart review, obstetrics logs (i.e., labor &
                                                                     Birth Defects Registry Program Manager
delivery), reportable ICD-9 code reports are received from the
                                                                     MCH Epidemiology; Section of Maternal, Child, and
health information management department
                                                                     Family Health
Pediatric & tertiary care hospitals: chart review, reportable
                                                                     3601 C Street, Suite 934 P O Box 240249
ICD-9 code reports are received from the health information
                                                                     Anchorage, AK 99524-0249
management department
                                                                     Phone: 907-269-3443
Third party payers: Medicaid databases, Indian health services
                                                                     Fax: 907-269-3493
Other specialty facilities: genetic counseling/clinical genetic
                                                                     E-mail: lisa_allen@health.state.ak.us
facilities
Other sources: physician reports                                     Janine Schoellhorn, MS, MPH
                                                                     MCH Epidemiology Unit Manager
Case Ascertainment                                                   MCH Epidemiology; Section of Maternal, Child, and
Conditions warranting chart review in newborn period: Any            Family Health
chart with an ICD-9 code of 760.71 or 742.1                          3601 C Street, Suite 934 P O Box 240249
Conditions warranting a chart review beyond the newborn              Anchorage, AK 99524-0249
period: all infant deaths (excluding prematurity)                    Phone: 907-269-3442
Coding: ICD-9-CM                                                     Fax: 907-269-3493
                                                                     E-mail: janine_schoellhorn@health.state.ak.us
Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), birth defect
diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                     S63

                                                             Arizona
                                       Arizona Birth Defects Monitoring Program (ABDMP)

Program status: Currently collecting data                             Conditions warranting a chart review beyond the newborn
Start year: 1986                                                      period: any infant with a codable defect
Earliest year of available data: 1986                                 Coding: CDC coding system based on BPA
Organizational location: Department of Health (Epidemiology/
Environment), Department of Health (Vital Statistics), Bureau of      Data Collected
Public Health Statistics/Office of Health Registries                   Infant/fetus: identification information (name, address, date-of-
Population covered annually: 80,505 in 1999                           birth, etc.), demographic information (race/ethnicity, sex, etc.),
Statewide: yes                                                        birth measurements (weight, gestation, Apgars, etc.), tests and
Current legislation or rule: statute: ARS sec. 36-133.rule: Title     procedures, birth defect diagnostic information
9, Chapter 4, Articles 1 and 5, Adopted effective 1991.               Mother: identification information (name, address, date-of-birth,
Legislation year enacted: 1988                                        etc.), demographic information (race/ethnicity, sex, etc.),
Case Definition                                                        gravidity/parity, illnesses/conditions, prenatal care, prenatal
Outcomes covered: 44 composite categories covering the major          diagnostic information, pregnancy/delivery complications,
birth defects and genetic diseases, as defined by the                  exposures, family history
BPA/MACDP codes                                                       Father: identification information (name, address, date-of-birth,
Pregnancy outcome: live births, fetal deaths—stillbirths,             etc.), demographic information (race/ethnicity, sex, etc.),
spontaneous abortions, etc. (20 weeks gestation and greater)          exposures, family history
Age: up to one year after delivery. If the nature of a defect
diagnosed in the first year of life is more precisely diagnosed        Data Collection Methods and Storage
later in the child’s life, and this information is contained in the   Data collection: printed abstract/report filled out by staff
chart at the time of our review (which occurs 2 -4 years after        Database storage/management: Oracle
the child’s birth or fetal death) then the more precise diagnosis
                                                                      Data Analysis
is used.
                                                                      Data analysis software: SAS
Residence: in-state birth to state resident.
                                                                      Quality assurance: validity checks, re-abstraction of cases,
Surveillance methods                                                  double-checking of assigned codes, comparison/verification
Case ascertainment: active case ascertainment, population based       between multiple data sources, data/hospital audits
Case finding/identification sources:                                    Data use and analysis: routine statistical monitoring,
Vital records: birth certificates, death certificates, fetal death      baseline rates, rates by demographic and other variables, time
certificates                                                           trends, epidemiologic studies (using only program data),
Other state based registries: programs for children with special      needs assessment, grant proposals, education/public
needs, specifically these are the Children Rehabilitation Services     awareness
facilities, which is part of the Office for Children with Special
Health Care Needs                                                     Funding
Delivery hospitals: chart review, disease index or discharge          Funding source: general state funds 44%, genetic screening
index, obstetrics logs (i.e., labor & delivery), regular nursery      revenues 21%, CDC grant 35%
logs, ICU/NICU logs or charts, pediatric logs,
postmortem/pathology logs, ultrasound reports, cytogenetic            Other
reports, stillborn logs, mother’s charts for stillborns               Web site: www.hs.state.az.us/phs/phstats/bdr/index.htm
Pediatric & tertiary care hospitals: chart review, disease index      Surveillance reports on file: Annual Reports, 1986 through
or discharge index, ICU/NICU logs or charts, pediatric logs,          1996.
postmortem/pathology logs, ultrasound reports, cytogenetic            Procedure manual available: yes
reports, stillborn logs, mother’s charts for still borns              Additional information on file: procedures manual, copy of
Other specialty facilities: cytogenetic laboratories, genetic         legislation, case record form, case finding log, abstraction forms,
counseling/clinical genetic facilities                                quality assurance procedures.
Other sources: children receiving services from Children
                                                                      Contacts
Rehabilitation Services (CRS) facilities, whose diagnosis falls
                                                                      Timothy J. Flood, M.D.
within the ABDMP case-finding criteria.
                                                                      Medical Director
Case Ascertainment                                                    Arizona Department of Health Services
Conditions warranting chart review in newborn period: any             2700 N. 3rd Street, Ste. 4000
chart with a ICD9-CM code 740-759, any chart with a selected          Phoenix, AZ 85004-1186
list of ICD9-CM codes outside 740-759, any chart with a CDC/          Phone: 602-542-7331
BPA code, any birth certificate with a birth defect box checked,       Fax: 602-364-0082
all stillborn infants, all neonatal deaths, all elective abortions    E-mail: tflood@hs.state.az.us
S64      STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Allison Varga, R.N.
Manager, Rapid Reporting System
Arizona Department of Health Services
2700 N 3rd Street, Ste 4075
Phoenix, AZ 85004-1186
Phone: 602-542-7335
Fax: 602-364-0296
E-mail: avarga@hs.state.az.us

Hoa Lien Tran, M.D., M.P.H.
Manager, ABDMP
Arizona Department of Health Services
2700 N. 3rd Street, Ste. 4075
Phoenix, AZ 85004-1186
Phone: 602-542-7349
Fax: 602-542-7447
E-mail: htran@hs.state.az.us

Marilou Catherine Blair, Ph.D.
Epidemiologist
Arizona Department of Health Services
2700 N 2rd Street, Ste. 4075
Phoenix, AZ 85004-1186
Phone: 602-542-7321
Fax: 602-542-7362
E-mail: mblair@hs.state.az.us
                               STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                    S65

                                                          Arkansas
                                   Arkansas Reproductive Health Monitoring System (ARHMS)

Program status: Currently collecting data                            Father: identification information (name, address, date-of-birth,
Start year: 1980                                                     etc.), demographic information (race/ethnicity, sex, etc.)
Earliest year of available data: 1980
                                                                     Data Collection Methods and Storage
Organizational location: University, Arkansas Children’s
                                                                     Data collection: printed abstract/report filled out by staff,
Hospital
                                                                     printed abstract/report submitted by other agencies (hospitals,
Population covered annually: 37,000
                                                                     etc.), electronic scanning of printed records
Statewide: yes
                                                                     Database storage/management: MS Access
Current legislation or rule: Senate Bill Act 214
Legislation year enacted: 1985                                       Data Analysis
                                                                     Data analysis software: SAS, MS Access
Case Definition
                                                                     Quality assurance: re-abstraction of cases, clinical review,
Outcomes covered: major structural birth defects
                                                                     timeliness
Pregnancy outcome: live births (all gestational ages and birth
                                                                     Data use and analysis: baseline rates, rates by demographic and
weights), fetal deaths—stillbirths, spontaneous abortions, etc.
                                                                     other variables, time trends, observed vs expected analyses,
(less than 20 week gestation, 20 weeks gestation and greater),
                                                                     epidemiologic studies (using only program data), identification
elective terminations (less than 20 week gestation, 20 weeks
                                                                     of potential cases for other epidemiologic studies, grant
gestation and greater)
                                                                     proposals, education/public awareness, prevention projects
Age: two years after delivery
Residence: in and out of state births to state residents             Funding
                                                                     Funding source: general state funds 80%, CDC grant 20%
Surveillance methods
Case ascertainment: active case ascertainment                        Other
Case finding/identification sources:                                   Web site: www.ARbirthdefectsresearch.uams.edu
Vital records: birth certificates                                     Surveillance reports on file: Annual reports
Delivery hospitals: chart review, disease index or discharge
                                                                     Contacts
index, discharge summaries, obstetrics logs (i.e., labor &
                                                                     Bridget S. Mosley, MPH
delivery), regular nursery logs, ICU/NICU logs or charts,
                                                                     Epidemiologist, Arkansas Center for Birth Defects
pediatric logs
                                                                     Research and Prevention
Pediatric & tertiary care hospitals: chart review, disease index
                                                                     11219 Financial Center Parkway, Financial Park Place,
or discharge index, discharge summaries, ICU/NICU logs or
                                                                     Suite 250
charts, pediatric logs, postmortem/pathology logs, specialty
                                                                     Little Rock, AR 72211
outpatient clinics
                                                                     Phone: 501-320-5000
Other specialty facilities: prenatal diagnostic facilities
                                                                     Fax: 501-320-5107
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/
                                                                     E-mail: MosleyBridgetS@uams.edu
clinical genetic facilities, maternal serum screening facilities
Case Finding/Case Data Collection Outside of the State: Yes,         Charlotte A. Hobbs, M.D., Ph.D.
program has data sharing agreement(s) with other state(s) or         Co-Director, Arkansas Center for Birth Defects Research
conduct case finding or data collection in another state.             and Prevention
                                                                     11219 Financial Center Parkway, Financial Park Place,
Case Ascertainment
                                                                     Suite 250
Conditions warranting chart review in newborn period: any
                                                                     Little Rock, AR 72211
chart with a ICD9-CM code 740-759, any chart with a selected
                                                                     Phone: (501) 320-5000
list of ICD9-CM codes outside 740-759, all stillborn infants
                                                                     Fax: (501) 320-5107
Conditions warranting a chart review beyond the newborn
                                                                     E-mail: HobbsCharlotte@uams.edu
period: any infant with a codable defect
Coding: CDC coding system based on BPA

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, birth defect diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal diagnostic
information, family history
S66       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                            California
                                     California Birth Defects Monitoring Program (CBDMP)

Program status: Currently collecting data                            Conditions warranting a chart review beyond the newborn
Start year: 1983                                                     period: facial dysmorphism or abnormal facies, cardiovascular
Earliest year of available data: 1983                                condition, all infant deaths (excluding prematurity), ocular
Organizational location: Department of Health (Occupational          conditions
and Environmental Disease Control), March of Dimes under             Coding: CDC coding system based on BPA
contract with the State Department of Health Services,
                                                                     Data Collected
Environmental and Occupational Disease Control.
                                                                     Infant/fetus: identification information (name, address, date-of-
Population covered annually: 60,000
                                                                     birth, etc.), demographic information (race/ethnicity, sex, etc.),
Statewide: No, the Program currently monitors a sampling of
                                                                     birth measurements (weight, gestation, Apgars, etc.), tests and
California births that are demographically similar to the state as
                                                                     procedures, infant complications, birth defect diagnostic
a whole and whose birth defects rates and trends have been
                                                                     information
reflective of those throughout California. Furthermore, the
                                                                     Mother: identification information (name, address, date-of-birth,
Program has statutory authority to do active surveillance
                                                                     etc.), demographic information (race/ethnicity, sex, etc.),
anywhere in the state when warranted by environmental
                                                                     gravidity/parity, illnesses/conditions, exposures, family history
incidents or concerns.
                                                                     Father: identification information (name, address, date-of-birth,
Current legislation or rule: Health and Safety Code, Division
                                                                     etc.), demographic information (race/ethnicity, sex, etc.), family
102, Part 2, Chapter 1, Sections 103825-103855, effective 1982,
                                                                     history
recodified 1996.
Legislation year enacted: 1982                                       Data Collection Methods and Storage
                                                                     Data collection: electronic file/report filled out by staff at
Case Definition                                                       facility (laptop, web-based, etc.), computerized reporting system
Outcomes covered: Serious structural birth defects, primarily        Database storage/management: FoxPro
encompassed within ICD codes 740-759.
Pregnancy outcome: live births (all gestational ages and birth       Data Analysis
weights), fetal deaths—stillbirths, spontaneous abortions, etc.      Data analysis software: SAS
(20 weeks gestation and greater), elective terminations (20          Quality assurance: validity checks, re-abstraction of cases,
weeks gestation and greater)                                         double-checking of assigned codes, comparison/verification
Age: one year                                                        between multiple data sources, clinical review, validity checks
Residence: In-state births to residents of 1 of 8 counties. Does     are done on all abstracts.
not include births in military hospitals.                            Data use and analysis: routine statistical monitoring, baseline
                                                                     rates, rates by demographic and other variables, monitoring
Surveillance methods                                                 outbreaks and cluster investigations, time trends, observed vs
Case ascertainment: Active case ascertainment, population            expected analyses, epidemiologic studies (using only program
based.                                                               data), identification of potential cases for other epidemiologic
Case finding/identification sources:                                   studies, needs assessment, service delivery, grant proposals,
Delivery hospitals: chart review, disease index or discharge         education/public awareness
index, discharge summaries, obstetrics logs (i.e., labor &
delivery), regular nursery logs, ICU/NICU logs or charts,            Funding
pediatric logs, postmortem/pathology logs, surgery logs              Funding source: general state funds 41%, MCH funds 5%,
Pediatric & tertiary care hospitals: chart review, disease index     CDC grant 17%, other federal funding (non-CDC grant) 19%,
or discharge index, discharge summaries, ICU/NICU logs or            DHS/UC Pass through 18%
charts, pediatric logs, postmortem/pathology logs, surgery logs,     Other
laboratory logs                                                      Web site: www.cbdmp.org
Other specialty facilities: prenatal diagnostic facilities           Surveillance reports on file: Current data on web site.
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/    Procedure manual available: yes
clinical genetic facilities, maternal serum screening facilities     Additional information on file: Publications Index, summaries
                                                                     of research findings, Collaboration Protocol, Confidentiality
Case Ascertainment                                                   Procedures, Cluster Investigation Protocol, statutes, video.
Conditions warranting chart review in newborn period: any
chart with a ICD9-CM code 740-759, any chart with a selected         Contacts
list of ICD9-CM codes outside 740-759, any chart with selected       Gretta G. Petersen, BA
procedure codes, any chart with selected defects or medical          Assistant Data Director
conditions ie abnormal facies, congenital heart disease, all         California Birth Defects Monitoring Program
stillborn infants, all neonatal deaths, all elective abortions,      1830 Embarcadero, Suite 100
Apgar 0-0                                                            Oakland, CA 94606-5226
                             STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S67

Phone: 559-438-4668
Fax: 559-438-4608
E-mail: gpe@cbdmp.org

Gary M. Shaw, DrPH, MPH
Research Director/Senior Epidemiologist
California Birth Defects Monitoring Program
1830 Embarcadero, Suite 100
Oakland, CA 94606-5226
Phone: 510-434-5337
Fax: 510-532-1004
E-mail: gsh@cbdmp.org
S68       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                         Colorado
                            Colorado Responds To Children With Special Needs: Colorado (CRCSN)

Program status: Currently collecting data                             Data Collected
Start year: 1988                                                      Infant/fetus: identification information (name, address, date-of-
Earliest year of available data: 1989                                 birth, etc.), demographic information (race/ethnicity, sex, etc.),
Organizational location: Department of Health (Epidemiology/          birth measurements (weight, gestation, Apgars, etc.), birth defect
Environment)                                                          diagnostic information
Population covered annually: 60,000                                   Mother: identification information (name, address, date-of-birth,
Statewide: yes                                                        etc.), demographic information (race/ethnicity, sex, etc.),
Current legislation or rule: Colorado Revised Statutes (CRS)          gravidity/parity, illnesses/conditions, prenatal care, prenatal
25-1-107                                                              diagnostic information, pregnancy/delivery complications
Legislation year enacted: 1985                                        Father: identification information (name, address, date-of-birth,
                                                                      etc.), demographic information (race/ethnicity, sex, etc.)
Case Definition                                                        Data Collection Methods and Storage
Outcomes covered: Structural, genetic and selected metabolic          Data collection: printed abstract/report filled out by staff,
birth defects; selected developmental disabilities; very low birth    printed abstract/report submitted by other agencies (hospitals,
weight (less than 1500 grams); others with medical and maternal       etc.), electronic file/report filled out by staff at facility (laptop,
risk factors for developmental delay                                  web-based, etc.), electronic file/report submitted by other
Pregnancy outcome: live births (all gestational ages and birth        agencies (hospitals, etc.)
weights), fetal deaths—stillbirths, spontaneous abortions, etc.       Database storage/management: MS Access
(any gestational age), diagnoses made prenatally are ascertained
                                                                      Data Analysis
Age: up to the 3rd birthday (up to the 7th birthday for fetal
                                                                      Data analysis software: SAS, ArcView (GIS software),
alcohol syndrome)
                                                                      Maptitude
Residence: events occurring in-state or out-of-state to Colorado
                                                                      Quality assurance: validity checks, comparison/verification
residents
                                                                      between multiple data sources, timeliness, data audits performed
                                                                      for problematic conditions; clinical review performed when
Surveillance methods
                                                                      necessary
Case ascertainment: Passive, population based, multiple
                                                                      Data use and analysis: routine statistical monitoring, baseline
sources; active for special projects including fetal alcohol
                                                                      rates, rates by demographic and other variables, monitoring
syndrome
                                                                      outbreaks and cluster investigations, time trends, time-space
Case finding/identification sources:
                                                                      cluster analyses, capture-recapture analyses, observed vs
Vital records: birth certificates, death certificates, fetal death
                                                                      expected analyses, epidemiologic studies (using only program
certificates
                                                                      data), needs assessment, referral, grant proposals,
Other state based registries: newborn genetic screening
                                                                      education/public awareness, prevention projects
program, newborn hearing screening program, Infectious disease
reporting database (meningitis, congenital infections)                Funding
Delivery hospitals: disease index or discharge index                  Funding source: general state funds 61%, CDC grant 33%,
Pediatric & tertiary care hospitals: disease index or discharge       other federal funding (non-CDC grant) 6%
index, postmortem/pathology logs, specialty outpatient clinics,
Cleft lip/cleft palate clinic, Spinal defects clinic, Developmental   Other
clinic                                                                Web site: http://www.cdphe.state.co.us/dc/crcsn/crcsnhome.asp
Third party payers: Medicaid databases                                Procedure manual available: yes
Other specialty facilities: prenatal diagnostic facilities            Additional information on file: CRCSN Reference Guide;
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/     CRCSN Community Notification and Referral Program Site
clinical genetic facilities                                           Manual; Fact sheets (available on web site)
Other sources: physician reports                                      Contacts
                                                                      Lisa Ann Miller, MD, MSPH
Case Ascertainment                                                    Medical Director
Conditions warranting chart review in newborn period: 13
                                                                      Colorado Responds to Children with Special Needs
selected conditions for CUSUM monitoring, fetal alcohol
                                                                      4300 Cherry Creek Dr
syndrome, or other designated reason. Review is performed for
                                                                      Denver, CO 80246-1530
12 additional conditions based on a data quality analysis.
                                                                      Phone: 303-692-2663
Conditions warranting chart review beyond newborn period: as
                                                                      Fax: 303-782-0904
above
                                                                      E-mail: lisa.miller@state.co.us
Coding: ICD-9-CM, extended code utilized to describe
syndromes and further specify condition
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                     S69

                                                         Connecticut
                           Connecticut Birth Defect Prevention And Surveillance Program (CBDPSP)

Program status: Currently collecting data                             Quality assurance: comparison/verification between multiple
Start year: 1995                                                      data sources, data/hospital audits
Earliest year of available data: 1993                                 Data use and analysis: routine statistical monitoring, baseline
Organizational location: Department of Health                         rates, rates by demographic and other variables, monitoring
(Epidemiology/Environment)                                            outbreaks and cluster investigations, time trends, prevention
Population covered annually: 45,000                                   projects, provider education
Statewide: yes
Current legislation or rule: Sec. 10a-132b transferred to             Other
Sec 19a-56a in 1999                                                   Comments: Birth defects surveillance for CT will be contained
Legislation year enacted: 1991                                        within the Children with Special Health Care Needs Registry,
                                                                      which is under development. A description of this new Registry
Case Definition
                                                                      follows.
Outcomes covered: ICD-9 codes 740 thru 759.9 and 760.71
                                                                      Name: Children with Special Health Care Needs Registry
Pregnancy outcome: live births (all gestational ages and birth
                                                                      (CSHCN Registry); Status: not currently collecting data;
weights), PDA GE to 2500 gms birth weight
                                                                      anticipated Spring 2002; Start year: 2000; Organization:
Age: up to one year after delivery
                                                                      Department of Health (Other): Children with Special Health
Residence: in and out of state births to state residents
                                                                      Care Needs Unit; Annual number of live births: approx 45,000;
Surveillance methods                                                  State-wide: yes; Legislation: Sec. 19a-56a. (Formerly Sec. 10a-
Case ascertainment: Passive population based                          132b). Birth defects surveillance program; Sec. 19a-54.
Case finding/identification sources:                                    (Formerly Sec. 19-21a). Registration of physically handicapped
Vital records: birth certificates, death certificates, matched birth/   children. Sec. 19a-53. (Formerly Sec. 19-21). Reports of
death file, ambulatory surgery and emergency room visits during        physical defects of children.
first year
Other state based registries: programs for children with special      Case Definition
needs, newborn genetic screening program, newborn hearing             Outcomes covered: All major structural birth defects;
screening program, newborn biochemical screening program,             biochemical, genetic and hearing impairment through linkage
cancer registry, AIDS/HIV registry                                    with Newborn Screening System; any condition which places a
Delivery hospitals: disease index or discharge index                  child at risk for needing specialized medical care (i.e.,
Pediatric & tertiary care hospitals: disease index or discharge       complications of prematurity, cancer, trauma, etc.); Pregnancy
index                                                                 outcome: Live births of all gestational ages and birth weight
Case Finding/Case Data Collection Outside of the State: Yes,          with exclusion criteria for certain disorders (i.e. PDA); Age: for
program has data sharing agreement(s) with other state(s) or          birth defects 1 year; for special health care needs 18 years;
conduct case finding or data collection in another state.              Residence: in and out of state births to Connecticut residents.
Case Ascertainment                                                    Surveillance methods
Conditions warranting chart review in newborn period: any             Case ascertainment: Passive population based system; Case
birth certificate with a birth defect box checked                      finding/identification sources: mandatory reporting by health
Coding: ICD-9-CM                                                      care providers and facilities; CSHCN Programs; birth and death
Data Collected                                                        certificates, matched birth and death file; Newborn Screening
Infant/fetus: identification information (name, address, date-of-      System (for genetic disorders and hearing impairment);disease/
birth, etc.), demographic information (race/ethnicity, sex, etc.),    discharge indexes- inpatient, ambulatory surgery and emergency
birth measurements (weight, gestation, Apgars, etc.)                  room visits (delivery, pediatric and tertiary care hospitals); Case
Mother: identification information (name, address, date-of-birth,      finding/data collection outside of the state: planned.
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, prenatal care, prenatal diagnostic information,     Case Ascertainment
pregnancy/delivery complications, exposures                           Chart review: any birth certificate with a birth defect box
Father: identification information (name, address, date-of-birth,      checked and no case report, cases from birth admissions where
etc.), demographic information (race/ethnicity, sex, etc.)            the reporting form is the sole source of case ascertainment (lack
                                                                      of confirmation by disease/discharge indexes); cases of multiple
Data Collection Methods and Storage                                   anomalies without a specified syndrome; cases where diagnoses
Data collection: electronic file/report submitted by other
                                                                      are qualified as ‘preliminary’ or ‘rule-out’; all cases of
agencies (hospitals, etc.)
                                                                      chromosomal anomalies lacking confirmation by karyotype, and
Database storage/management: SPSS
                                                                      a 10% random sample, stratified on birth hospital, of all obvious
Data Analysis                                                         birth defects that were not reported from birth admission but
Data analysis software: SPSS                                          documented in the CHIME database; Coding: ICD-9-CM
S70       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Data Collected
Infant/fetus: identification, demographic and birth defect
diagnostic information; Mother: identification, demographic,
gravidity/parity, illnesses/conditions, prenatal care and diagnostic
information, pregnancy/delivery complications and exposures;
Mother: identification, demographic, gravidity/parity, illnesses/
conditions, prenatal care and diagnostic information, pregnancy/
delivery complications and exposures; Father: identification and
demographic.

Data Collection Methods And Storage
Electronic file/report added onto the existing electronic Newborn
Screening System filled out by staff at facility, with printed
reports as backup. Electronic file/report submitted by other
agencies. Linkage to electronic Newborn Screening System for
cases of biochemical, genetic and hearing impairment; Database
Storage/Management: Oracle; Data Analysis: SAS; Quality
Assurance: validity checks, verification between multiple data
sources, data/hospital audits, selected clinical review, timeliness,
completeness of screening/reporting for birth cohort,
confirmation of referral and enrollment in CSHCN Centers; Data
Use and Analysis: routine statistical monitoring, baseline rates
for birth defects and other special needs conditions, rates by
demographic and other variables, monitoring outbreaks and
cluster investigations, time trends, epidemiologic studies, needs
assessment, service delivery, referral, grant proposals, prevention
projects and provider education.

Budget
Source: 100% CDC Grant

Contacts
Mary Fleissner, MS, DrPH
Director of Environmental Epidemiology and Occupational
Health, Connecticut Department of Public Health
410 Capitol Ave.
Hartford, CT 06134
Phone: 860-509-7739
Fax: 860-509-7785
E-mail: mary.lou.fleissner@po.state.ct.us

Bonnie Lang Silverman, PhD
Epidemiologist III, Connecticut Department of Public Health,
Children with Special Health Care Needs, Genetics and
Newborn Screening Unit
410 Capitol Avenue, MS #11MAT
Hartford, CT 06134
Phone: 860-509-8081
Fax: 860-509-7720
E-mail: bonnie.silverman@po.state.ct.us
                               STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS            S71

                                                            Delaware
                                            Delaware Birth Defects Surveillance Project

Program status: Currently collecting data
Organizational location: Department of Health (Maternal and
Child Health), Community Health Care Access Section,
Women’s & Reproductive Health
Population covered annually: 10,574
Statewide: yes
Current legislation or rule: House Bill No. 197, an act to
amend Title 16 of the Delaware Code relating to Birth Defects
Legislation year enacted: 1997

Case Definition
Outcomes covered: Birth Defects Registry - All birth defects for
passive surveillance, selected birth defects for active
surveillance, developmental disabilities if due to a birth defect,
selected metabolic defects, genetic diseases, infant mortality,
congenital infections that cause birth defects, neural tube
defects.
Pregnancy outcome: live births (all gestational ages and birth
weights), fetal deaths—stillbirths, spontaneous abortions, etc.
(20 weeks gestation and greater)
Age: Birth to 5 years
Residence: In-state and out-of-state birth to state resident, and
in-state birth to state non-resident.

Surveillance methods
Case ascertainment: Active and passive surveillance,
population-based.
Case finding/identification sources:
Vital records: birth certificates, death certificates

Case Ascertainment
Coding: ICD-9-CM, six-digit modified BPA/ICD-9 codes

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.)
Mother: demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage
Data collection: electronic file/report submitted by other
agencies (hospitals, etc.)
Database storage/management: electronic birth certificate

Data Analysis
Data use and analysis: baseline rates, time trends, time-space
cluster analyses, observed vs expected analyses

Contacts
JoAnn Baker, MSN, FNP
Director, Family Planning Program, DE Division of Public
Health
655 Bay Rd., Suite 4B; PO Box 637
Dover, DE 19901-0637
Phone: (302) 739-3111
Fax: (302) 739-6653
E-mail: jobaker@state.de.us
S72       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                        District of Columbia
                                       District of Columbia Birth Defects Surveillance System

Program status: Program has not started collecting data               birth measurements (weight, gestation, Apgars, etc.), tests and
Start year: 2002                                                      procedures, infant complications, birth defect diagnostic
Organizational location: Department of Health (Maternal and           information
Child Health)                                                         Mother: identification information (name, address, date-of-birth,
Population covered annually: 15000 (approximately half are to         etc.), demographic information (race/ethnicity, sex, etc.),
District residents)                                                   gravidity/parity, illnesses/conditions, prenatal care, prenatal
Statewide: yes                                                        diagnostic information, pregnancy/delivery complications,
                                                                      exposures, family history
Case Definition                                                        Father: identification information (name, address, date-of-birth,
Pregnancy outcome: live births, fetal deaths—stillbirths,             etc.), demographic information (race/ethnicity, sex, etc.),
spontaneous abortions, etc. (20 weeks gestation and greater)          illnesses/conditions, exposures, family history
Age: Up to one year after birth except in the case of Fetal
Alcohol Sysndrom which is up to six years.                            Data Collection Methods and Storage
                                                                      Data collection: printed abstract/report filled out by staff,
Residence: State resident at the time of diagnosis
                                                                      printed abstract/report submitted by other agencies (hospitals,
Surveillance methods                                                  etc.), electronic file/report submitted by other agencies
Case ascertainment: combination of active and passive,                (hospitals, etc.)
population-based                                                      Database storage/management: Oracle
Case finding/identification sources:                                    Data Analysis
Vital records: birth certificates, death certificates, fetal death      Data analysis software: Epi-Info, SPSS, SAS
certificates                                                           Quality assurance: validity checks, re-abstraction of cases,
Other state based registries: programs for children with special      double-checking of assigned codes, comparison/verification
needs, newborn genetic screening program, newborn hearing             between multiple data sources, data/hospital audits, clinical
screening program                                                     review, timeliness
Delivery hospitals: chart review, disease index or discharge          Data use and analysis: routine statistical monitoring, baseline
index, discharge summaries, obstetrics logs (i.e., labor &            rates, rates by demographic and other variables, monitoring
delivery), regular nursery logs, ICU/NICU logs or charts,             outbreaks and cluster investigations, time trends, time-space
pediatric logs                                                        cluster analyses, observed vs expected analyses, epidemiologic
Third party payers: Medicaid databases                                studies (using only program data), needs assessment, service
Other specialty facilities: prenatal diagnostic facilities            delivery, referral, grant proposals, education/public awareness,
(ultrasound, etc.), genetic counseling/clinical genetic facilities,   prevention projects
maternal serum screening facilities
Other sources: physician reports                                      Funding
Case Finding/Case Data Collection Outside of the State: Yes,          Funding source: MCH funds 5%, CDC grant 95%
program has data sharing agreement(s) with other state(s) or
                                                                      Other
conduct case finding or data collection in another state.
                                                                      Procedure manual available: yes
Case Ascertainment                                                    Additional information on file: Procedures manual is in
Conditions warranting chart review in newborn period: any             development. However, it will be available for sharing once
chart with selected defects or medical conditions ie abnormal         completed.
facies, congenital heart disease, any birth certificate with a birth   Contacts
defect box checked, all stillborn infants, all neonatal deaths, all   Deneen Long-White
infants in NICU or special care nursery, all prenatal diagnosed       Chief, Data Collection and Analysis Division, DC
or suspected cases, ICD9-CM 740-741.9, 742.3, 749-749.25,             Department of Health, Maternal and Family Health
758-758.2, 760.71, 389, 243, 270.1, 270.3, 271.1, 282.2,              Administration
282.4-.63, 282.69, 282.7                                              825 N. Capital Street, NE, Room 3181
Conditions warranting a chart review beyond the newborn               Washington, DC 20002
period: facial dysmorphism or abnormal facies, developmental          Phone: 202-442-9343
delay, all infant deaths (excluding prematurity), auditory/hearing    Fax: 202-442-4828
conditions, any infant with a codable defect                          E-mail: dlong-white@dchealth.com
Coding: CDC coding system based on BPA, ICD-9-CM
                                                                      Joyce Brooks, MSW, LICSW
Data Collected                                                        Chief, Children With Special Health Care Needs Division, DC
Infant/fetus: identification information (name, address, date-of-      Department of Health, Maternal and Family Health
birth, etc.), demographic information (race/ethnicity, sex, etc.),    Administration
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S73

825 North Capitol Street, NE Room 3106
Washington, DC 20002
Phone: (202)442-9338
Fax: (202)442-4947
E-mail: jbrooks@dchealth.com
S74       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                              Florida
                                               Florida Birth Defects Registry (FBDR)

Program status: Currently collecting data                            Data use and analysis: routine statistical monitoring, baseline
Start year: 1998                                                     rates, rates by demographic and other variables, monitoring
Earliest year of available data: 1996                                outbreaks and cluster investigations, time trends, observed vs
Organizational location: Department of Health (Epidemiology/         expected analyses, epidemiologic studies (using only program
Environment)                                                         data), identification of potential cases for other epidemiologic
Population covered annually: 204,125 in 2000                         studies, needs assessment, grant proposals, education/public
Statewide: yes                                                       awareness, prevention projects
Current legislation or rule: Section 381.0031(1,2) F.S., allows
                                                                     Funding
for development of a list of reportable conditions. Birth defects
                                                                     Funding source: general state funds 100%
were added to the list in July 1999.
                                                                     Other
Case Definition
                                                                     Web site: http://fbdr.hsc.usf.edu/
Outcomes covered: Major structural malformations and selected
                                                                     Surveillance reports on file: 1996 Annual Report, Neural Tube
genetic disorders
                                                                     Defects Report, Data Quality Assurance Report, Active
Pregnancy outcome: live births (all gestational ages and birth
                                                                     Surveillance Report, Website
weights), fetal deaths—stillbirths, spontaneous abortions, etc.
                                                                     Procedure manual available: yes
(20 weeks gestation and greater)
                                                                     Additional information on file: Grants, progress reports,
Age: until age 1
                                                                     educational and health promotion materials, and video tapes
Residence: Florida
                                                                     Contacts
Surveillance methods
                                                                     Alan D. Rowan, MPA
Case ascertainment: Population based passive case
                                                                     Senior Management Analyst II
ascertainment
                                                                     Florida Department of Health
Case finding/identification sources:
                                                                     4052 Bald Cypress Way, Bin A08
Vital records: birth certificates, matched birth/death file, fetal
                                                                     Tallahassee, FL 32399-1712
death certificates
                                                                     Phone: 850-245-4444, ext. 2159
Other state based registries: programs for children with special
                                                                     Fax: 850-922-8473
needs
                                                                     E-mail: Alan_Rowan@doh.state.fl.us
Delivery hospitals: discharge summaries
Pediatric & tertiary care hospitals: discharge summaries             David R. Johnson, MD, MS
Other sources: physician reports                                     Chief, Bureau of Environmental Epidemiology
                                                                     Florida Department of Health
Case Ascertainment
                                                                     4052 Bald Cypress Way, Bin# A08
Coding: ICD-9-CM
                                                                     Tallahassee, FL 32399-1712
Data Collected                                                       Phone: 850-245-4115
Infant/fetus: identification information (name, address, date-of-     Fax: 850-922-8473
birth, etc.), demographic information (race/ethnicity, sex, etc.),   E-mail: David_Johnson@doh.state.fl.us
birth measurements (weight, gestation, Apgars, etc.), birth defect
                                                                     Jane A. Correia, BS
diagnostic information
                                                                     Environmental Specialist III
Mother: identification information (name, address, date-of-birth,
                                                                     Florida Department of Health
etc.), demographic information (race/ethnicity, sex, etc.),
                                                                     4052 Bald Cypress Way, Bin A08
gravidity/parity, illnesses/conditions, prenatal care, pregnancy/
                                                                     Tallahassee, FL 32399-1712
delivery complications, exposures
                                                                     Phone: 850-245-4444; ext. 2198
Father: identification information (name, address, date-of-birth,
                                                                     Fax: 850-922-8473
etc.)
                                                                     E-mail: Jane_Correia@doh.state.fl.us
Data Collection Methods and Storage
Data collection: printed abstract/report submitted by other
agencies (hospitals, etc.), electronic file/report submitted by
other agencies (hospitals, etc.)
Database storage/management: MS Access, SAS, Excell

Data Analysis
Data analysis software: SPSS, SAS, MS Access, Excell
Quality assurance: validity checks, comparison/verification
between multiple data sources, timeliness
                               STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                    S75

                                                            Georgia
                                   Metropolitan Atlanta Congenital Defects Program (MACDP)

Program status: Currently collecting data                            infections), cardiovascular condition, all infant deaths
Start year: 1967                                                     (excluding prematurity), childhood deaths between 1 and 6,
Earliest year of available data: 1968                                any infant with a codable defect
Organizational location: CDC, National Center on Birth               Coding: CDC coding system based on BPA
Defects and Developmental Disabilities
                                                                     Data Collected
Population covered annually: 50019
                                                                     Infant/fetus: identification information (name, address, date-of-
Statewide: No, births to mothers residing within one of five
                                                                     birth, etc.), demographic information (race/ethnicity, sex, etc.),
counties in the metropolitan Atlanta area of the state of Georgia
                                                                     birth measurements (weight, gestation, Apgars, etc.), tests and
Current legislation or rule: Official Code of Georgia (OCGA)
                                                                     procedures, infant complications, birth defect diagnostic
31-12-2                                                              information
Legislation year enacted: 1994                                       Mother: identification information (name, address, date-of-birth,
                                                                     etc.), demographic information (race/ethnicity, sex, etc.),
Case Definition                                                       gravidity/parity, illnesses/conditions, prenatal diagnostic
Outcomes covered: Major structural or genetic birth defects          information, pregnancy/delivery complications, exposures,
Pregnancy outcome: live births (       20 weeks or birth weight      family history
     500 grams), fetal deaths—stillbirths, spontaneous abortions,    Father: identification information (name, address, date-of-birth,
etc. (20 weeks gestation and greater), elective terminations (20     etc.), demographic information (race/ethnicity, sex, etc.),
weeks gestation and greater)                                         illnesses/conditions, family history
Age: Before 6 years of age
Residence: Births to mothers residing in one of five                  Data Collection Methods and Storage
metropolitan Atlanta counties                                        Data collection: printed abstract/report filled out by staff
                                                                     Database storage/management: MS Access, SAS, Mainframe
Surveillance methods
Case ascertainment: Active case ascertainment; population-           Data Analysis
based                                                                Data analysis software: Epi-Info, SPSS, SAS, MS Access
Case finding/identification sources:                                   Quality assurance: double-checking of assigned codes, data/
Vital records: birth certificates, death certificates, fetal death     hospital audits, clinical review, timeliness
certificates                                                          Data use and analysis: routine statistical monitoring, baseline
Delivery hospitals: disease index or discharge index, obstetrics     rates, rates by demographic and other variables, monitoring
logs (i.e., labor & delivery), regular nursery logs, ICU/NICU        outbreaks and cluster investigations, time trends, capture-
logs or charts, pediatric logs, postmortem/pathology logs,           recapture analyses, observed vs expected analyses,
surgery logs, cardiac catheterization laboratories, stillbirth       epidemiologic studies (using only program data), identification
reports                                                              of potential cases for other epidemiologic studies, prevention
Pediatric & tertiary care hospitals: disease index or discharge      projects
index, postmortem/pathology logs, surgery logs, laboratory logs
                                                                     Funding
Other specialty facilities: cytogenetic laboratories
                                                                     Funding source: other federal funding 100%
Case Ascertainment                                                   Other
Conditions warranting chart review in newborn period: any            Web site: www.cdc.gov/ncbddd/bd
chart with a ICD9-CM code 740-759, any chart with a selected         Surveillance reports on file: numerous reports and bibliography
list of ICD9-CM codes outside 740-759, any chart with a CDC/         Procedure manual available: yes
BPA code, any chart with selected procedure codes, any chart         Additional information on file: rate tables by defect by year
with selected defects or medical conditions ie abnormal facies,      Comments: For surveillance reports and other information
congenital heart disease, any birth certificate with a birth defect   regarding the MACDP, contact CDC.
box checked, infants with low birth weight or low gestation
( 2500 grams or 37 weeks), all stillborn infants, all neonatal       Contacts
deaths, all infants with low APGAR scores, all infants in NICU       Leslie A. O’Leary, PhD
or special care nursery, elective abortions occurring 20 weeks       Managing Director
gestation                                                            Centers for Disease Control and Prevention
Conditions warranting a chart review beyond the newborn              4770 Buford Highway, NE, MS F45
period: facial dysmorphism or abnormal facies, failure to            Atlanta, GA 30341-3724
thrive, developmental delay, fever of unknown origin,                Phone: 770-488-3241
recurrent infections, CNS condition (ie seizure), GI condition       Fax: 770-488-7197
(ie intestinal blockage), GU condition (ie recurrent                 E-mail: LOLeary@cdc.gov
S76      STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Janet D. Cragan, MD
Medical Director
Centers for Disease Control and Prevention
4770 Buford Highway, NE, MS F45
Atlanta, GA 30341-3724
Phone: 770-488-7178
Fax: 770-488-7197
E-mail: JCragan@cdc.gov
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                      S77

                                                              Hawaii
                                               Hawaii Birth Defects Program (HBDP)

Program status: Currently collecting data                             Case Ascertainment
Start year: 1988                                                      Conditions warranting chart review in newborn period: any
Earliest year of available data: 1986                                 chart with a ICD9-CM code 740-759, any chart with a selected
Organizational location: University                                   list of ICD9-CM codes outside 740-759, any chart with a CDC/
Population covered annually: 20,036 average over 15 years             BPA code, all stillborn infants, all neonatal deaths, all prenatally
Statewide: yes                                                        diagnosed or suspected cases, medical terminations and
Current legislation or rule: Hawaii Revised Statutes, Sections        spontaneous abortions where fetus was diagnosed with a birth
321-31 and 338-2 in conjunction per Executive Chamber ruling          defect and parents elected not to bring baby to term or mother
by Governor on June 16,1989. Hawaii Revised Statutes 324-1            spontaneously aborted.
and 324-2 (1990 Amendments) for additional legislative                Conditions warranting a chart review beyond the newborn
                                                                      period: all infant deaths (excluding prematurity), childhood
authority.
                                                                      deaths between 1 and 6, any infant with a codable defect
Legislation year enacted: 1989
                                                                      Coding: CDC coding system based on BPA
Case Definition                                                        Data Collected
Outcomes covered: All 1,154 recommended by CDC in                     Infant/fetus: identification information (name, address, date-of-
their May 1987 Birth Defects Branch Six Digit Code for                birth, etc.), demographic information (race/ethnicity, sex, etc.),
Reportable Congenital Anomalies, based on B.P.A.                      birth measurements (weight, gestation, Apgars, etc.), tests and
Classification of Diseases (1979) and W.H.O. I’C’D’9 CM                procedures, infant complications, birth defect diagnostic
(1977).                                                               information
Pregnancy outcome: live births, fetal deaths (less than 20 week       Mother: identification information (name, address, date-of-birth,
gestation, 20 weeks gestation and greater), elective terminations     etc.), demographic information (race/ethnicity, sex, etc.),
(less than 20 week gestation, 20 weeks gestation and greater),        gravidity/parity, illnesses/conditions, prenatal care, prenatal
medical terminations that were carried out because some               diagnostic information, pregnancy/delivery complications,
screening test or diagnositc procedure documented that the fetus      exposures, family history
was severely impaired with a birth defect and the parents             Father: identification information (name, address, date-of-birth,
elected not to bring the baby to term                                 etc.), demographic information (race/ethnicity, sex, etc.),
Age: Up to one year after delivery                                    illnesses/conditions, exposures, family history
Residence: All in-state Hawaii births (resident and non-
                                                                      Data Collection Methods and Storage
resident).                                                            Data collection: printed abstract/report filled out by staff,
                                                                      electronic file/report filled out by staff at facility (laptop, web-
Surveillance methods
                                                                      based, etc.), lap top computers are the first choice, followed by
Case ascertainment: Active case ascertainment, population-
                                                                      hard copy if electronic is not possible.
based.
                                                                      Database storage/management: MS Access
Case finding/identification sources:
Vital records: Vital records are used to supplement information       Data Analysis
collected from other data sources but are not used to primarily       Data analysis software: MS Access
identify potential cases. Vital records data are also used as         Quality assurance: validity checks, re-abstraction of cases,
denominators for determining birth defects rates per 10,000           double-checking of assigned codes, comparison/verification
births.                                                               between multiple data sources, clinical review, timeliness
Other state based registries: The HBDP supplies aggregate, de-        Data use and analysis: routine statistical monitoring, baseline
identified data to the entities listed; they do not supply data to     rates, rates by demographic and other variables, monitoring
the HBDP.                                                             outbreaks and cluster investigations, time trends, epidemiologic
Delivery hospitals: chart review, disease index or discharge          studies (using only program data), identification of potential
index, discharge summaries, postmortem/pathology logs, Note:          cases for other epidemiologic studies, needs assessment, grant
Information from specific logs, laboratories, clinics, etc. are        proposals, education/public awareness, prevention projects,
usually found in the medical record when doing chart review.          publication in peer reviewed professional journals.
Pediatric & tertiary care hospitals: chart review, disease index      Funding
or discharge index, discharge summaries, Note: Information            Funding source: general state funds 65.5%, CDC grant 24.1%,
from specific logs, laboratories, clinics, etc. are usually found in   other federal funding (non-CDC grant) 5.6%, private
the medical record when doing chart review.                           foundations 4.8%
Other specialty facilities: prenatal fetal diagnostic facilities
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/     Other
clinical genetic facilities                                           Web site: http://members.aol.com/entropynot/hbdp.html
S78       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Surveillance reports on file: (8) Hawaii Birth Defects Program
Statewide Surveillance Data Reports - 1) 1989-1991, 2)
1988-1993, 3) 1988-1994, 4) 1988-1995, 5) 1987-1996,
6) 1986-1997, 7) 1986-1998, 8) 1986-1999, 9) 1986-
2000, and 10) 1986-2001, to be published in late 2002.
Procedure manual available: yes
Additional information on file: HBDP informational brochure;
organizational chart; copy of legislation; original abstraction
forms; revised abstraction forms; revised mini-manual; annual
report (FY 88-89); sample of quarterly reports; slides of HBDP
data; quality assurance report (completeness, accuracy,
timeliness); special study reports (5); peer-reviewed journal
articles (14).

Contact
Ruth D. Merz, M.S.
Administrator, Hawaii Birth Defects Program
76 North King Street, #208
Honolulu, HI 96817-5157
Phone: 808-587-4120
Fax: 808-587-4130
E-mail: hbdp@crch.hawaii.edu
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S79

                                             Idaho

Program status: No surveillance program

Contacts
Brett Harrell, BS, MAT
CSHCN Manager, ID Dept of Health & Welfare
450 W. State Street
Boise, ID 83720
Phone: 208-334-5962
Fax: 208-332-7307
E-mail: harrellb@idhw.state.id.us
S80       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                           Illinois
                                    Adverse Pregnancy Outcomes Reporting System (APORS)

Program status: Currently collecting data                            etc.), electronic file/report filled out by staff at facility (laptop,
Start year: 1988                                                     web-based, etc.), electronic file/report submitted by other
Earliest year of available data: 1988                                agencies (hospitals, etc.)
Organizational location: Department of Health (Epidemiology/         Database storage/management: MS Access, FoxPro, Mainframe
Environment)
                                                                     Data Analysis
Population covered annually: 182,027                                 Data analysis software: SAS, MS Access
Statewide: yes                                                       Quality assurance: re-abstraction of cases,
Current legislation or rule: Illinois Health and Hazardous           comparison/verification between multiple data sources,
Substances Registry Act (410 ILCS 525)                               data/hospital audits, timeliness
Legislation year enacted: 1985                                       Data use and analysis: routine statistical monitoring, time
                                                                     trends, epidemiologic studies (using only program data), needs
Case Definition                                                       assessment, service delivery, referral
Outcomes covered: ICD-9-CM Codes 740.0 through 759.9;
infants positive for controlled substances; serious congenital       Funding
infections; congenital endocrine, metabolic or immune disorders;     Funding source: general state funds 77%, CDC grant 20%,
congenital blood disorders; other conditions such as retinopathy     other federal funding (non-CDC grant) 3%
of prematurity, fetal alcohol syndrome, intrauterine growth          Other
retardation; very low birth weights; neonatal or fetal deaths        Web site: idph.state.il.us/about/epi/aporsrpt.htm
Pregnancy outcome: live births, fetal deaths—stillbirths,            Surveillance reports on file: See Web Site
spontaneous abortions, etc. (20 weeks gestation and greater)         Comments: APORS is transition to more active case
Age: End of newborn hospitalization                                  ascertainment and expand case age to 2 years.
Residence: In-state births mandatory
                                                                     Contacts
Surveillance methods                                                 Trish Egler, MPA
Case ascertainment: Population based, passive ascertainment of       Manager, Illinois Department of Public Health
newborn cases. Active ascertainment of major birth defects           605 W. Jefferston Street
                                                                     Springfield, IL 62761
diagnosed up to 2 years of age began 7/01.
                                                                     Phone: 217-785-7133
Case finding/identification sources:
                                                                     Fax: 217-557-5152
Vital records: fetal death certificates
                                                                     E-mail: tegler@idph.state.il.us
Delivery hospitals: chart review, disease index or discharge
index, discharge summaries, Hospitals are mandated to identiy        Tiefu Shen, MD, MPH, PhD
newborn cases and report to IDPH.                                    Division Chief, Illinois Department of Public Health
                                                                     605 W. Jefferson Street
Case Ascertainment                                                   Springfield, IL 62761
Conditions warranting chart review in newborn period:                Phone: 217-785-7118
Newborn infant charts are reviewed for clarification of hospital      Fax: 217-524-1770
reporting; about 5% of newborn cases are reviewed. Maternal          E-mail: tshen@idph.state.il.us
charts are reviewed to collect maternal data.
Coding: ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.)
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, pregnancy/
delivery complications, exposures
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage
Data collection: printed abstract/report filled out by staff,
printed abstract/report submitted by other agencies (hospitals,
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                    S81

                                                           Indiana
                   Indiana Birth Defects Surveillance System/Indiana Birth Problems Registry (IBDSS/BPR)

Program status: Interested in developing a program                     Data Collection Methods and Storage
Start year: 2002                                                       Data collection: electronic file/report submitted by other
Earliest year of available data: 2003                                  agencies (hospitals, etc.)
Organizational location: Department of Health (Epidemiology/           Database storage/management: Oracle, SAS
Environment, Maternal and Child Health)
                                                                       Data Analysis
Population covered annually: 83,000                                    Data analysis software: SAS
Statewide: yes                                                         Quality assurance: validity checks, comparison/verification
Current legislation or rule: IC 16-38-4-7Rule 410 IAC 21-3             between multiple data sources, data/hospital audits, timeliness
Legislation year enacted: 2001                                         Data use and analysis: routine statistical monitoring, baseline
                                                                       rates, rates by demographic and other variables, monitoring
Case Definition                                                         outbreaks and cluster investigations, time trends, observed vs
Outcomes covered: ICD-9-CM Codes 740-759.9, low birth                  expected analyses, needs assessment, service delivery, referral,
weight, fetal deaths, metabolic and hearing disorders from             grant proposals, education/public awareness, prevention projects
Newborn Screening, selected neoplasms,and congenital blood
disorders, and certain eye disorders.                                  Funding
Pregnancy outcome: live births (all gestational ages and birth         Funding source: general state funds 3%, MCH funds 25%,
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        CDC grant 72%
(20 weeks gestation and greater), elective terminations (20            Contacts
weeks gestation and greater)                                           Roland Gamache, PhD, MBA
Age: Less than 3 years of age                                          Indiana State Department of Health
Residence: In and out of state births to state residents               2 North Meridian Street, 3-D
                                                                       Indianapolis, IN 46204
Surveillance methods                                                   Phone: 317-233-7412
Case ascertainment: Passive, population based.                         Fax: 317-233-7378
Case finding/identification sources:                                     E-mail: rgamache@isdh.state.in.us
Vital records: birth certificates, death certificates, matched birth/
                                                                       Ruwanthi Silva, MS
death file, fetal death certificates, elective termination certificates
                                                                       Birth Defects Coordinator, Indiana State Dept. of Health
Other state based registries: newborn genetic screening
                                                                       2 N. Meridian Street, 3-D
program, newborn hearing screening program, cancer registry
                                                                       Indianapolis, IN 46204
Delivery hospitals: disease index or discharge index, random
                                                                       Phone: (317)233-7571
chart audits
                                                                       Fax: (317)233-7378
Pediatric & tertiary care hospitals: discharge summaries,              E-mail: asilva@isdh.state.in.us
random chart audits
Other specialty facilities: prenatal diagnostic facilities
(ultrasound, etc.)
Other sources: physician reports

Case Ascertainment
Conditions warranting chart review in newborn period:
Randomly selected charts of targeted medical conditions.
Coding: ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), birth defect
diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, prenatal
diagnostic information, pregnancy/delivery complications
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)
S82       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                                Iowa
                                                  Iowa Birth Defects Registry (IBDR)

Program status: Currently collecting data                               Conditions warranting a chart review beyond the newborn
Start year: 1983                                                        period: facial dysmorphism or abnormal facies, failure to thrive,
Earliest year of available data: 1983                                   developmental delay, CNS condition (ie seizure), GI condition
Organizational location: University                                     (ie intestinal blockage), cardiovascular condition, all infant
Population covered annually: 37,831 avg 10 yr                           deaths (excluding prematurity), ocular conditions,
Statewide: yes                                                          auditory/hearing conditions, any infant with a codable defect
Current legislation or rule: Administrative Code of Iowa,               Coding: CDC coding system based on BPA, ICD-9-CM
Volume I, Chapter 135.37, Section 40, Division III                      Data Collected
Legislation year enacted: 1986; Revised 2001                            Infant/fetus: identification information (name, address, date-of-
                                                                        birth, etc.), demographic information (race/ethnicity, sex, etc.),
Case Definition
                                                                        birth measurements (weight, gestation, Apgars, etc.), tests and
Outcomes covered: Major Birth Defects and Metabolic
                                                                        procedures, infant complications, birth defect diagnostic
Disorders                                                               information
Pregnancy outcome: live births (all gestational ages and birth          Mother: identification information (name, address, date-of-birth,
weights), fetal deaths—stillbirths, spontaneous abortions, etc.         etc.), demographic information (race/ethnicity, sex, etc.),
(less than 20 week gestation, 20 weeks gestation and greater),          gravidity/parity, illnesses/conditions, prenatal care, prenatal
elective terminations (less than 20 week gestation, 20 weeks            diagnostic information, pregnancy/delivery complications,
gestation and greater)                                                  exposures, family history
Age: 1 year                                                             Father: identification information (name, address, date-of-birth,
Residence: Maternal residence in Iowa at time of delivery               etc.), demographic information (race/ethnicity, sex, etc.),
                                                                        exposures, family history
Surveillance methods
Case ascertainment: Population-based (state-wide), active case          Data Collection Methods and Storage
ascertainment                                                           Data collection: printed abstract/report filled out by staff,
Case finding/identification sources:                                      electronic file/report filled out by staff at facility (laptop, web-
Vital records: birth certificates, death certificates, fetal death        based, etc.)
certificates                                                             Database storage/management: MS Access, Oracle, SAS,
Delivery hospitals: chart review, disease index or discharge            Mainframe
index, discharge summaries, obstetrics logs (i.e., labor &
                                                                        Data Analysis
delivery), regular nursery logs, ICU/NICU logs or charts,
                                                                        Data analysis software: Epi-Info, SPSS, SAS, MS Access,
pediatric logs, postmortem/pathology logs, surgery logs,
                                                                        Oracle
specialty outpatient clinics
                                                                        Quality assurance: validity checks, re-abstraction of cases,
Pediatric & tertiary care hospitals: chart review, disease index
                                                                        double-checking of assigned codes, comparison/verification
or discharge index, discharge summaries, ICU/NICU logs or
                                                                        between multiple data sources, clinical review, timeliness
charts, pediatric logs, postmortem/pathology logs, surgery logs,
                                                                        Data use and analysis: routine statistical monitoring, baseline
laboratory logs, specialty outpatient clinics
                                                                        rates, rates by demographic and other variables, monitoring
Other specialty facilities: prenatal diagnostic facilities
                                                                        outbreaks and cluster investigations, time trends, capture-
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/
                                                                        recapture analyses, observed vs expected analyses,
clinical genetic facilities, maternal serum screening facilities
                                                                        epidemiologic studies (using only program data), identification
Other sources: physician reports, Outpatient Surgery Facilities
                                                                        of potential cases for other epidemiologic studies, needs
Case Finding/Case Data Collection Outside of the State: Yes,
                                                                        assessment, service delivery, referral, grant proposals, education/
program has data sharing agreement(s) with other state(s) or
                                                                        public awareness, prevention projects
conduct case finding or data collection in another state.
                                                                        Funding
Case Ascertainment                                                      Funding source: general state funds 5%, CDC grant 38%, other
Conditions warranting chart review in newborn period: any               federal funding (non-CDC grant) 32%, IA Department of Health
chart with a ICD9-CM code 740-759, any chart with a ICD9-               -1 year commitment 25%
CM codes in addition to 740-759, any chart with a selected list
of ICD9-CM codes outside 740-759, any chart with a CDC/BPA              Other
code, any chart with selected procedure codes, any chart with           Web site: http://www.public-health.uiowa.edu/birthdefects
selected defects or medical conditions ie abnormal facies,              Surveillance reports on file: Iowa Birth Defects Registry
congenital heart disease, any birth certificate with a birth defect      Annual Report 2000Iowa Birth Defects Registry Annual Report
box checked, all stillborn infants, all neonatal deaths, all elective   2001
abortions, all prenatal diagnosed or suspected cases                    Procedure manual available: yes
                          STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S83

Contacts
Paul A. Romitti, Ph.D.
Director, Iowa Birth Defects Registry
University of Iowa, C21-E GH, 200 Hawkins Dr
Iowa City, IA 52242
Phone: 319-384-5012
Fax: 319-384-5004
E-mail: paul-romitti@uiowa.edu
S84       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                               Kansas
                                                   Birth Defects Reporting System

Program status: Currently collecting data                            Data use and analysis: routine statistical monitoring, rates by
Start year: 1985                                                     demographic and other variables, monitoring outbreaks and
Earliest year of available data: 1985                                cluster investigations, Ad-hoc upon request.
Organizational location: Department of Health (Vital Statistics,
                                                                     Funding
Maternal and Child Health)
                                                                     Funding source: MCH funds 100%
Population covered annually: 39,654 (Year 2000)
Statewide: yes                                                       Contacts
Current legislation or rule: KSA 65-102                              Jamey D. Kendall, RN, BSN
Legislation year enacted: 1979                                       Director, CSHCN, Kansas Department of Health &
                                                                     Environment
Case Definition                                                       1000 SW Jackson, Suite 220
Outcomes covered: The outcome data below are available from          Topeka, KS 66612-1274
Office of Vital Statistics, but are not used as part of a birth       Phone: 785-296-1316
defects surveillance system. 24 anomalies are listed on the birth    Fax: 785-296-8616
certificate and are reported, however, these are not linked to        E-mail: jkendall@kdhe.state.ks.us
ICD codes.
Pregnancy outcome: live births (all gestational ages and birth       Carloyn S. Nelson, BSE
weights), fetal deaths—stillbirths, spontaneous abortions, etc.      Director, Children’s Develomental Services, Kansas Dept of
(less than 20 week gestation, 20 weeks gestation and greater),       Health and Environment
elective terminations (less than 20 week gestation, 20 weeks         1000 SW Jackson Suite 220
gestation and greater)                                               Topeka, KS 66612-1274
Age: Passive reporting on congenital malformation reports            Phone: 785-296-6135
continues through the first year of life.                             Fax: 785-296-8626
Residence: In and out of state births to Kansas residents.           E-mail: cnelson@kdhe.state.ks.us

Surveillance methods
Case ascertainment: Passive, population-based.
Case finding/identification sources:
Vital records: birth certificates
Pediatric & tertiary care hospitals: Congenital Malformations
reporting form - sent by hospitals for infants up to one year of
age.
Case Finding/Case Data Collection Outside of the State: Yes,
program has data sharing agreement(s) with other state(s) or
conduct case finding or data collection in another state.

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, prenatal
diagnostic information, pregnancy/delivery complications,
exposures, family history
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.), family
history

Data Analysis
Data analysis software: SAS, Ad-hoc summary reports
developed as needed from Crystal Reports.
Quality assurance: Office of Vital Statistics conducts
verification on birth certificate data.
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                     S85

                                                            Kentucky
                                            Kentucky Birth Surveillance Registry (KBSR)

Program status: Currently collecting data                             birth measurements (weight, gestation, Apgars, etc.), tests and
Start year: 1996                                                      procedures, infant complications, birth defect diagnostic
Earliest year of available data: 1998                                 information
Organizational location: Department for Public Health,                Mother: identification information (name, address, date-of-birth,
Division of Adult and Child Health                                    etc.), demographic information (race/ethnicity, sex, etc.),
Population covered annually: 54,500                                   gravidity/parity, illnesses/conditions, prenatal care, prenatal
Statewide: yes                                                        diagnostic information, pregnancy/delivery complications,
Current legislation or rule: KRS 211.651-211.670                      exposures, family history
Legislation year enacted: 1992                                        Father: identification information (name, address, date-of-birth,
                                                                      etc.), demographic information (race/ethnicity, sex, etc.)
Case Definition
Outcomes covered: Major Birth Defects, Genetic Diseases, Fetal        Data Collection Methods and Storage
Mortality                                                             Data collection: printed abstract/report filled out by staff,
Pregnancy outcome: live births (all gestational ages and birth        printed abstract/report submitted by other agencies (hospitals,
weights), fetal deaths—stillbirths, spontaneous abortions, etc.       etc.), electronic file/report submitted by other agencies
(20 weeks gestation and greater, 20 weeks or 350 gms).                (hospitals, etc.)
Age: up to fifth birthday                                              Database storage/management: MS Access, Mainframe
Residence: All in-state births; out of state births to state
                                                                      Data Analysis
residents
                                                                      Data analysis software: SAS, MS Access
Surveillance methods                                                  Quality assurance: comparison/verification between multiple
Case ascertainment: Combination of active and passive,                data sources, data/hospital audits, clinical review, timeliness
hospital based                                                        Data use and analysis: routine statistical monitoring, baseline
Case finding/identification sources:                                    rates, rates by demographic and other variables, monitoring
Vital records: birth certificates, death certificates, matched birth/   outbreaks and cluster investigations, time trends, identification
death file, fetal death certificates                                    of potential cases for other epidemiologic studies, needs
Other state based registries: programs for children with special      assessment, service delivery, referral, grant proposals, education/
needs, newborn genetic screening program, newborn hearing             public awareness, prevention projects
screening program, newborn biochemical screening program
                                                                      Funding
Delivery hospitals: chart review, disease index or discharge
                                                                      Funding source: general state funds 40%, CDC grant 60%
index, discharge summaries, obstetrics logs (i.e., labor &
delivery), ICU/NICU logs or charts, specialty outpatient clinics      Other
Pediatric & tertiary care hospitals: disease index or discharge       Web site: http://publichealth.state.ky.us/kbsr.htm
index, discharge summaries, ICU/NICU logs or charts                   Surveillance reports on file: legislation and regulation; Hospital
Other specialty facilities: genetic counseling/clinical genetic       Reporting Administrative Manual; draft confidentiality
facilities                                                            guidelines; conditions definitions, KBSR fact sheet, KBSR
Other sources: Local health departments                               brochure
                                                                      Procedure manual available: yes
Case Ascertainment
Conditions warranting chart review in newborn period: any             Contacts
chart with a ICD9-CM code 740-759, any chart with a ICD9-             Joyce M. Robl, MS, CGC
CM codes in addition to 740-759, any chart with a selected list       KBSR Program Administrator, Kentucky Department of
of ICD9-CM codes outside 740-759, any chart with selected             Public Health
defects or medical conditions ie abnormal facies, congenital          275 East Main Street, HS 2GW-A
heart disease, any birth certificate with a birth defect box           Frankfort, KY 40621
checked, prenatally diagnosed or suspected cases                      Phone: 502-564-2154
Conditions warranting a chart review beyond the newborn               Fax: 502-564-8389
period: facial dysmorphism or abnormal facies, failure to thrive,     E-mail: joyce.robl@mail.state.ky.us
CNS condition (ie seizure), cardiovascular condition, any infant
with a codable defect                                                 Sandy G Fawbush, RN
Coding: ICD-9-CM, ICD-10 for Vital Statistics data                    Nurse Consultant/Inspector, Kentucky Department of Public
                                                                      Health
Data Collected                                                        275 East Main Street
Infant/fetus: identification information (name, address, date-of-      Frankfort, KY 40621
birth, etc.), demographic information (race/ethnicity, sex, etc.),    Phone: 502-564-2154
S86      STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Fax: 502-564-8389
E-mail: sandy.fawbush@mail.state.ky.us

Tracey D. Miller, MPH
Epidemiologist, Kentucky Department for Public Health
275 East Main Street
Frankfort, KY 40621
Phone: 502-564-2154
Fax: 502-564-8389
E-mail: tracey.miller@mail.state.ky.us
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                  S87

                                                            Louisiana
                                      Louisiana Birth Defects Monitoring Network (LBDMN)

Program status: Program has not started collecting data               Bhavani Sathya, MPH
Start year: 2002                                                      Coordinator, Louisiana Birth Defects Monitoring Network,
Earliest year of available data: 2003-2005                            Louisiana Office of Public Health
Organizational location: Children’s Special Health Services           325 Loyola Ave., Room 605
Population covered annually: 65,000                                   New Orleans, LA 70112
Statewide: yes                                                        Phone: (504) 568-5055
Current legislation or rule: R.S. 40:31.41 - 40:31.48, Act No.        Fax: (504) 568-5854
194                                                                   E-mail: bsathya@dhh.state.la.us
Legislation year enacted: 2001

Case Definition
Outcomes covered: major structural, functional, or genetic birth
defect
Pregnancy outcome: in progress, in progress, in progress
Age: in progress
Residence: in and out of state births to state residents (tentative
criteria)

Surveillance methods
Case ascertainment: active case ascertainment
Case finding/identification sources:
Vital records: in progress
Other state based registries: in progress
Delivery hospitals: in progress
Pediatric & tertiary care hospitals: in progress
Third party payers: in progress
Other sources: in progress

Case Ascertainment
Conditions warranting chart review in newborn period: in
progress
Coding: in progress

Data Collection Methods and Storage
Data collection: in progress
Database storage/management: in progress
Data Analysis
Data analysis software: in progress
Quality assurance: in progress
Data use and analysis: in progress

Funding
Funding source: in progress
Other
Web site: in progress
Comments: pending
Contacts
Linda B. Pippins, M.C.D.
Administrator, Children’s Special Health Services, Louisiana
Office of Public Health
325 Loyola Ave., Room 607
New Orleans, LA 70112
Phone: 504-568-5055
Fax: 504-568-7529
E-mail: lrose@dhh.state.la.us
S88       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                              Maine
                                               Maine Birth Defects Program (MBDP)

Program status: Program has not started collecting data               birth measurements (weight, gestation, Apgars, etc.), tests and
Start year: 1999                                                      procedures, infant complications, birth defect diagnostic
Earliest year of available data: not available yet                    information
Organizational location: Department of Health (Maternal and           Mother: identification information (name, address, date-of-birth,
Child Health)                                                         etc.), demographic information (race/ethnicity, sex, etc.),
Population covered annually: 13,800                                   gravidity/parity, illnesses/conditions, prenatal care, prenatal
Statewide: yes                                                        diagnostic information, pregnancy/delivery complications,
Current legislation or rule: 22 MRSA c. 1687                          exposures, family history
Legislation year enacted: 1999                                        Father: identification information (name, address, date-of-birth,
                                                                      etc.), demographic information (race/ethnicity, sex, etc.)
Case Definition
Outcomes covered: Selected major birth defects: NTD, Clefts,          Data Collection Methods and Storage
Gastroschisis and Omphalocele, Major heart defects, Trisomy           Data collection: printed abstract/report filled out by staff,
13,18 and 21                                                          electronic file/report filled out by staff at facility (laptop, web-
Pregnancy outcome: live births (all gestational ages and birth        based, etc.)
weights), fetal deaths—stillbirths, spontaneous abortions, etc.       Database storage/management: MS Access, Citrix
(20 weeks gestation and greater, prenatally diagnosed at any
                                                                      Data Analysis
gestation), elective terminations (20 weeks gestation and greater,
                                                                      Data analysis software: SAS
prenatally diagnosed at any gestation)
                                                                      Quality assurance: validity checks, re-abstraction of cases,
Age: Through age one
                                                                      double-checking of assigned codes, comparison/verification
Residence: All in-state births to Maine residents
                                                                      between multiple data sources, data/hospital audits, clinical
Surveillance methods                                                  review, timeliness
Case ascertainment: Combination of active and passive case            Data use and analysis: routine statistical monitoring, baseline
ascertainment, population based                                       rates, rates by demographic and other variables, observed vs
Case finding/identification sources:                                    expected analyses, needs assessment, service delivery, referral,
Vital records: birth certificates, death certificates, matched birth/   grant proposals, education/public awareness, prevention projects
death file, fetal death certificates
                                                                      Funding
Other state based registries: programs for children with special
                                                                      Funding source: MCH funds 5%, genetic screening revenues
needs, newborn genetic screening program, newborn hearing
                                                                      25%, CDC grant 70%
screening program, newborn biochemical screening program
Delivery hospitals: disease index or discharge index, obstetrics      Contacts
logs (i.e., labor & delivery), regular nursery logs, ICU/NICU         Ellie Mulcahy, RNC
logs or charts, specialty outpatient clinics                          Director, Genetics Program, Maine Bureau of Health
Pediatric & tertiary care hospitals: disease index or discharge       11 State House Station, 286 Water St.-7th floor
index, ICU/NICU logs or charts, pediatric logs, specialty             Augusta, ME 04333
outpatient clinics                                                    Phone: 207-287-4623
Other specialty facilities: genetic counseling/clinical genetic       Fax: 207-287-4743
facilities, maternal serum screening facilities                       E-mail: eleanor.a.mulcahy@state.me.us
Other sources: physician reports
                                                                      Patricia Y. Day, RN,
Case Ascertainment                                                    Coordinator, MBDP, Maine Bureau of Health
Conditions warranting chart review in newborn period: any             11 State House Station, 286 Water St. 7th floor
chart with selected defects or medical conditions ie abnormal         Augusta, ME 04333
facies, congenital heart disease, any birth certificate with a birth   Phone: 207-287-8424
defect box checked, all infants in NICU or special care nursery,      Fax: 207-287-4743
all prenatal diagnosed or suspected cases                             E-mail: patricia.y.day@state.me.us
Conditions warranting a chart review beyond the newborn
period: facial dysmorphism or abnormal facies, cardiovascular
condition, all infant deaths (excluding prematurity), any infant
with a codable defect
Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                  S89

                                                         Maryland
                              Maryland Birth Defects Reporting And Information System (BDRIS)

Program status: Currently collecting data                            Mother: identification information (name, address, date-of-birth,
Start year: 1983                                                     etc.), demographic information (race/ethnicity, sex, etc.),
Earliest year of available data: 1984                                gravidity/parity, illnesses/conditions, prenatal care, prenatal
Organizational location: Family Health Administration, Office         diagnostic information, pregnancy/delivery complications,
for Genetics & Children with Special Health Care Needs               exposures, family history
Population covered annually: 68,000                                  Father: identification information (name, address, date-of-birth,
Statewide: yes                                                       etc.), demographic information (race/ethnicity, sex, etc.),
Current legislation or rule: Health-General Article, Section 18-     exposures, family history
206; Annotated Code of Maryland
                                                                     Data Collection Methods and Storage
Legislation year enacted: 1982
                                                                     Data collection: printed abstract/report filled out by staff,
Case Definition                                                       printed abstract/report submitted by other agencies (hospitals,
Outcomes covered: Selected Birth Defects - Anencephaly, Spina        etc.)
Bifida, Hydrocephaly, Cleft Lip, Cleft Lip with Cleft Palate,         Database storage/management: MS Access, SAS, Mainframe,
Cleft Palate, Esophageal Atresia/Stenosis, Rectal/Anal Atresia,      Visual dBASE, ASCII files
Hypospadias, Reduction Deformity - Upper Limb, Reduction
Deformity - Lower Limb, Congenital Dislocation of the Hip,           Data Analysis
and Down Syndrome                                                    Data analysis software: SAS
Pregnancy outcome: live births (all gestational ages and birth       Quality assurance: validity checks, double-checking of assigned
weights), fetal deaths—stillbirths, spontaneous abortions, etc.      codes, comparison/verification between multiple data sources
and terminations (20 weeks gestation and greater, or       500       Data use and analysis: routine statistical monitoring, baseline
grams weight). We do accept reports on fetal deaths and              rates, rates by demographic and other variables, monitoring
terminations 500 grams or 20 weeks if sent to us                     outbreaks and cluster investigations, time trends, time-space
Age: Newborn                                                         cluster analyses, observed vs expected analyses, epidemiologic
Residence: All in-state births                                       studies (using only program data), identification of potential
                                                                     cases for other epidemiologic studies, needs assessment, service
Surveillance methods                                                 delivery, referral, grant proposals, education/public awareness,
Case ascertainment: Passive surveillance, multiple source,
                                                                     prevention projects
population based
Case finding/identification sources:                                   Funding
Vital records: birth certificates, fetal death certificates            Funding source: general state funds 100%
Other state based registries: programs for children with special
                                                                     Other
needs, newborn hearing screening program, newborn
                                                                     Web site: http://mdpublichealth.org/genetics (then select Birth
biochemical screening program, Sickle Cell Disease
                                                                     Defects Reporting Information System)
Delivery hospitals: obstetrics logs (i.e., labor & delivery),
                                                                     Surveillance reports on file: Provisional surveillance reports
regular nursery logs, ICU/NICU logs or charts. Sentinel Birth
                                                                     1984-1992; 1995-1999
Defects hospital report form is our primary source.
                                                                     Procedure manual available: yes
Pediatric & tertiary care hospitals: discharge summaries, ICU/
                                                                     Additional information on file: Copies of publications,
NICU logs or charts. Sentinel Birth Defects hospital report form
                                                                     legislation, miscellaneous booklets and other information related
is our primary source.
                                                                     to birth defects surveillance in Maryland.
Midwifery facilities:
Other specialty facilities: genetic counseling/clinical genetic      Contacts
facilities, maternal serum screening facilities                      Susan R. Panny, MD
Case Ascertainment                                                   Director, Office for Genetics and CSHCN, Maryland Dept.
Conditions warranting chart review in newborn period: any            of Health & Mental Hygiene
chart with a ICD9-CM code 740-759, any chart with selected           201 W. Preston Street, Room 421A
defects or medical conditions ie abnormal facies, congenital         Baltimore, MD 21201
heart disease, any birth certificate with a birth defect box          Phone: 410-767-6730
checked, All fetal death certificates                                 Fax: 410-333-5047
Coding: ICD-9-CM                                                     E-mail: PannyS@dhmh.state.md.us
Data Collected                                                       Rosemary A. Baumgardner, B.A.
Infant/fetus: identification information (name, address, date-of-     Data Manager, Birth Defects Program, Maryland Dept. of
birth, etc.), demographic information (race/ethnicity, sex, etc.),   Health & Mental Hygiene
birth measurements (weight, gestation, Apgars, etc.), tests and      201 W. Preston Street, Room 423A
procedures, birth defect diagnostic information                      Baltimore, MD 21201
S90      STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Phone: 410-767-6801
Fax: 410-333-5047
E-mail: BaumgardnerR@dhmh.state.md.us
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                     S91

                                                       Massachusetts
                    Massachusetts Center For Birth Defects Research And Prevention Monitoring Program,
                                   Massachusetts Department Of Public Health (MCBDRP)

Program status: Currently collecting data                             Mother: identification information (name, address, date-of-birth,
Start year: 1997                                                      etc.), demographic information (race/ethnicity, sex, etc.),
Earliest year of available data: 1999 for statewide data              gravidity/parity, illnesses/conditions, prenatal care, prenatal
Organizational location: Bureau of Health Statistics, Research        diagnostic information, pregnancy/delivery complications,
and Evaluation                                                        exposures, family history
Population covered annually: 80,866 for 1999                          Father: identification information (name, address, date-of-birth,
Statewide: yes                                                        etc.), demographic information (race/ethnicity, sex, etc.)
Current legislation or rule: Massachusetts General Laws,
Chapter 111, Section 67E. March of Dimes has introduced an            Data Collection Methods and Storage
amendment in 2000 to expand ascertainment sources from                Data collection: printed abstract/report filled out by staff,
birthing hospitals to physicians. Waiting approval.                   printed abstract/report submitted by other agencies (hospitals,
Legislation year enacted: 1963                                        etc.), electronic scanning of printed records, Data from printed
                                                                      hospital reporting form is entered into electronic surveillance
Case Definition                                                        data base.
Outcomes covered: major birth defects and chromosomal                 Database storage/management: MS Access, SAS, Mainframe,
anomalies                                                             Microsoft Excel
Pregnancy outcome: live births (all gestational ages and birth
weights, exclude less than 20 weeks gestation or less than or         Data Analysis
equal to 350 grams), fetal deaths—stillbirths, spontaneous            Data analysis software: SAS, MS Access, Microsoft Excel
abortions, etc. (20 weeks gestation and greater, or      350 gms)     Quality assurance: validity checks, re-abstraction of cases,
Age: up to one year                                                   double-checking of assigned codes, comparison/verification
Residence: in and out of state births to state residents              between multiple data sources, data/hospital audits, clinical
                                                                      review, timeliness
Surveillance methods                                                  Data use and analysis: routine statistical monitoring, baseline
Case ascertainment: population based, state-wide, combination         rates, rates by demographic and other variables, monitoring
of active case ascertainment and administrative review                outbreaks and cluster investigations, time trends, observed vs
Case finding/identification sources:                                    expected analyses, epidemiologic studies (using only program
Vital records: birth certificates, death certificates, matched birth/   data), identification of potential cases for other epidemiologic
death file, fetal death certificates                                    studies, grant proposals, Selected cases from surveillance are
Delivery hospitals: chart review, disease index or discharge          eligible for CDC study, National Birth Defects Prevention Study
index, regular nursery logs, ICU/NICU logs or charts,
postmortem/pathology logs                                             Funding
Pediatric & tertiary care hospitals: chart review, disease index      Funding source: CDC grant 100%
or discharge index, ICU/NICU logs or charts,
postmortem/pathology logs                                             Other
Case Finding/Case Data Collection Outside of the State: Yes,          Web site: website in development
program has data sharing agreement(s) with other state(s) or          Surveillance reports on file: first surveillance report to be
conduct case finding or data collection in another state.              published in November 2001
                                                                      Procedure manual available: yes
Case Ascertainment
Conditions warranting chart review in newborn period: any             Contacts
chart with a ICD9-CM code 740-759, any chart with a selected          Marlene Anderka, MPH
list of ICD9-CM codes outside 740-759, all stillborn infants          Principal Investigator
Conditions warranting a chart review beyond the newborn               Massachusetts Department of Public Health
period: facial dysmorphism or abnormal facies, developmental          5th Floor, 250 Washington Street
delay, auditory/hearing conditions, any infant with a codable         Boston, MA 02108-4619
defect                                                                Phone: 617-994-9847
Coding: CDC coding system based on BPA, ICD-9-CM                      Fax: 617-624-5574
                                                                      E-mail: lisa.d.miller@state.ma.us
Data Collected
Infant/fetus: identification information (name, address, date-of-      Cathy Higgins, BA
birth, etc.), demographic information (race/ethnicity, sex, etc.),    Hospital Coordinator
birth measurements (weight, gestation, Apgars, etc.), tests and       Massachusetts Department of Public Health
procedures, infant complications, birth defect diagnostic             5th Floor, 250 Washington Street
information                                                           Boston, MA 02108-4619
S92       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

Phone: 617-624-5510
Fax: 617-624-5574
E-mail: cathleen.higgins@state.ma.us
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                        S93

                                                             Michigan
                                              Michigan Birth Defects Registry (MBDR)

Program status: Currently collecting data                             gravidity/parity, illnesses/conditions, prenatal care, prenatal
Start year: 1992                                                      diagnostic information, pregnancy/delivery complications,
Earliest year of available data: 1992                                 exposures
Organizational location: Department of Community Health,              Father: identification information (name, address, date-of-birth,
Bureau of Epidemiology                                                etc.), demographic information (race/ethnicity, sex, etc.)
Population covered annually: 135,400
                                                                      Data Collection Methods and Storage
Statewide: yes
                                                                      Data collection: printed abstract/report filled out by staff,
Current legislation or rule: Public Act 236 of 1988
                                                                      printed abstract/report submitted by other agencies (hospitals,
Legislation year enacted: 1988
                                                                      etc.), electronic file/report filled out by staff at facility (laptop,
Case Definition                                                        web-based, etc.), electronic file/report submitted by other
Outcomes covered: Congenital anomalies, certain infectious            agencies (hospitals, etc.)
diseases, conditions caused by maternal exposures and other           Database storage/management: FoxPro
diseases of major organ systems                                       Data Analysis
Pregnancy outcome: live births (all gestational ages and birth        Data analysis software: SPSS, MS Access, Fox-pro
weights)                                                              Quality assurance: validity checks, re-abstraction of cases,
Age: up to two years after delivery                                   double-checking of assigned codes, comparison/verification
Residence: Michigan births regardless of residence, out of state      between multiple data sources, data/hospital audits, timeliness
births diagnosed or treated in Michigan regardless of residence       Data use and analysis: routine statistical monitoring, baseline
                                                                      rates, rates by demographic and other variables, monitoring
Surveillance methods                                                  outbreaks and cluster investigations, time trends, observed vs
Case ascertainment: passive, population-based.                        expected analyses, epidemiologic studies (using only program
Case finding/identification sources:                                    data), identification of potential cases for other epidemiologic
Vital records: birth certificates, death certificates, matched birth/   studies, needs assessment, service delivery, referral, grant
death file, cytogenic laboratories                                     proposals, education/public awareness, prevention projects
Other state based registries: programs for children with special
needs, newborn genetic screening program, newborn hearing             Funding
screening program, cancer registry                                    Funding source: general state funds 85%, CDC grant 15%
Delivery hospitals: chart review, disease index or discharge
                                                                      Other
index, specialty outpatient clinics
                                                                      Web site: www.mdch.state.mi.us/PHA/OSR/index.htm
Pediatric & tertiary care hospitals: chart review, disease index
                                                                      Surveillance reports on file: birth defects incidence and
or discharge index
                                                                      mortality
Other specialty facilities: cytogenetic laboratories
                                                                      Procedure manual available: yes
Case Ascertainment                                                    Contacts
Conditions warranting chart review in newborn period: any             Glenn Copeland, MBA
chart with a ICD9-CM code 740-759, any chart with a selected          Director, Michigan Dept. of Community Health
list of ICD9-CM codes outside 740-759, any chart with selected        3423 N. Logan
defects or medical conditions ie abnormal facies, congenital          Lansing, MI 48909
heart disease, any birth certificate with a birth defect box           Phone: 517-335-8677
checked                                                               Fax: 517-335-9513
Conditions warranting a chart review beyond the newborn               E-mail: CopelandG@state.mi.us
period: facial dysmorphism or abnormal facies, ocular
conditions, auditory/hearing conditions, any infant with a            Dennis Dodson, MS
codable defect                                                        Manager, Michigan Dept. of Community Health
Coding: CDC coding system based on BPA, ICD-9-CM                      3423 N. Logan St.
                                                                      Lansing, MI 48909
Data Collected                                                        Phone: 517-335-8861
Infant/fetus: identification information (name, address, date-of-      Fax: 517-335-8711
birth, etc.), demographic information (race/ethnicity, sex, etc.),    E-mail: Dodsondl@state.mi.us
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
S94       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                               Minnesota

Program status: Currently collecting data                             Daniel Symonik , Ph.D.
Start year: 2002                                                      Unit Supervisor, Minnesota Department of Health
Earliest year of available data: 2002                                 121 East 7th Place, Suite 220
Organizational location: Environmental Health                         St. Paul, MN 55164
Population covered annually: 66,000                                   Phone: 651-215-0776
Statewide: yes                                                        Fax: 651-215-0975
Current legislation or rule: MS 144.2215                              E-mail: daniel.symonik@health.state.mn.us
Legislation year enacted: 1996

Case Definition
Outcomes covered: Initial system will analyze neural tube
defects and oro-facial clefts; additional conditions may be added
in the future.
Pregnancy outcome: live births, fetal deaths—stillbirths,
spontaneous abortions, etc.
Age: Initial proposal of up to 1 year after delivery; will be
examined collaboratively and adjusted as needed.
Residence: Initial proposal of only using in-state data; will be
examined collaboratively and adjusted as needed.

Surveillance methods
Case ascertainment: Initial system will be passive combined
with selected active confirmation; will be examined
collaboratively and adjusted as needed.
Case finding/identification sources:
Vital records: birth certificates, death certificates, matched birth/
death file, fetal death certificates, Infant death records
Third party payers: Medicaid databases, health maintenance
organizations (HMOs)

Case Ascertainment
Conditions warranting chart review in newborn period: any
birth certificate with a birth defect box checked
Coding: ICD-9-CM, only for selected data retrieval; functioning
system not yet in place.

Funding
Funding source: general state funds 5%, CDC grant 90%,
March of Dimes in-kind match to CDC grant 5%

Other
Web site: www.health.state.mn.us
Comments: Formal program currently being developed; data
collected, data collection and storage methods, and data analysis
methods will be determined during start-up phase. State has
access/expertise in SAS, Epi-Info, Access, FoxPro, and Oracle
databases.

Contacts
Myron Falken, Ph.D., M.P.H.
Principal Epidemiologist, Minnesota Department of Health
121 East 7th Place, Suite 220
St. Paul, MN 55164
Phone: 651-215-0877
Fax: 651-215-0975
E-mail: myron.falken@health.state.mn.us
                                STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                       S95

                                                              Mississippi
                                             Mississippi Birth Defects Registry (MBDR)

Program status: Currently collecting data                              (ie intestinal blockage), GU condition (ie recurrent infections),
Start year: 2000                                                       cardiovascular condition, all infant deaths (excluding
Earliest year of available data: 2000                                  prematurity), ocular conditions, auditory/hearing conditions, any
Organizational location: Department of Health (Maternal and            infant with a codable defect
Child Health), Department of Health (Division of Genetics),            Coding: CDC coding system based on BPA, ICD-9-CM
Mississippi State Department of Health
                                                                       Data Collected
Population covered annually: 44,000
                                                                       Infant/fetus: identification information (name, address, date-of-
Statewide: yes
                                                                       birth, etc.), demographic information (race/ethnicity, sex, etc.),
Current legislation or rule: Section 41-21-205 of the
                                                                       birth measurements (weight, gestation, Apgars, etc.), tests and
Mississippi Code
                                                                       procedures, infant complications, birth defect diagnostic
Legislation year enacted: 1997
                                                                       information
Case Definition                                                         Mother: identification information (name, address, date-of-birth,
Outcomes covered: A birth defect is an abnormality of                  etc.), demographic information (race/ethnicity, sex, etc.),
structure, function or metabolism, whether genetically                 gravidity/parity
determined or a result of environmental influences during               Father: identification information (name, address, date-of-birth,
embryonic or fetal life. A birth defect may present from the           etc.), demographic information (race/ethnicity, sex)
time of conception through one year after birth, or later in life.     Data Collection Methods and Storage
Pregnancy outcome: live births (all gestational ages and birth         Data collection: printed abstract/report filled out by staff,
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        electronic file/report filled out by staff at facility (laptop, web-
(20 weeks gestation and greater, 350 grams or more), elective          based, etc.), electronic file/report submitted by other agencies
terminations (20 weeks gestation and greater, 350 grams or             (hospitals, etc.)
more)                                                                  Database storage/management: MS Access
Age: 0 to 21
Residence: In and out of state births to state residents               Data Analysis
                                                                       Data analysis software: MS Access
Surveillance methods                                                   Quality assurance: validity checks, re-abstraction of cases, data/
Case ascertainment: combination of active and passive case             hospital audits, clinical review, timeliness
ascertainment                                                          Data use and analysis: routine statistical monitoring, baseline
Case finding/identification sources:                                     rates, rates by demographic and other variables, monitoring
Vital records: birth certificates, death certificates, fetal death       outbreaks and cluster investigations, time trends, time-space
certificates                                                            cluster analyses, capture-recapture analyses, observed vs
Other state based registries: newborn genetic screening                expected analyses, epidemiologic studies (using only program
program, newborn hearing screening program, newborn                    data), identification of potential cases for other epidemiologic
biochemical screening program, cancer registry, birth and death        studies, needs assessment, service delivery, referral, grant
certificates                                                            proposals, education/public awareness, prevention projects
Delivery hospitals: chart review, disease index or discharge
index, discharge summaries, regular nursery logs, pediatric logs,      Funding
postmortem/pathology logs, specialty outpatient clinics                Funding source: general state funds 10%, MCH funds 10%,
Pediatric & tertiary care hospitals: chart review, discharge           genetic screening revenues 80%
summaries, ICU/NICU logs or charts, pediatric logs,                    Contacts
postmortem/pathology logs                                              Jerry McClure, Director
Other specialty facilities: cytogenetic laboratories, genetic          Genetics Program, Mississippi State Dept. of Health
counseling/clinical genetic facilities                                 P.O. Box 1700
Other sources: physician reports                                       Jackson, MS 39215-1700
                                                                       Phone: 601-576-7619
Case Ascertainment                                                     Fax: 601-576-7498
Conditions warranting chart review in newborn period: any
                                                                       E-mail: jmcclure@msdh.state.ms.us
chart with a ICD9-CM code 740-759, any chart with a selected
list of ICD9-CM codes outside 740-759, any birth certificate
with a birth defect box checked, all stillborn infants, all neonatal
deaths, all prenatal diagnosed or suspected cases
Conditions warranting a chart review beyond the newborn
period: facial dysmorphism or abnormal facies, failure to thrive,
developmental delay, CNS condition (ie seizure), GI condition
S96       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                              Missouri
                                                   Missouri Birth Defects Registry

Program status: Currently collecting data                             Quality assurance: validity checks, comparison/verification
Start year: 1985                                                      between multiple data sources
Earliest year of available data: 1980                                 Data use and analysis: routine statistical monitoring, baseline
Organizational location: Department of Health (Vital Statistics)      rates, rates by demographic and other variables, monitoring
Population covered annually: 75,000                                   outbreaks and cluster investigations, time trends, time-space
Statewide: yes                                                        cluster analyses, observed vs expected analyses, epidemiologic
                                                                      studies (using only program data), needs assessment, service
Case Definition
                                                                      delivery, referral, grant proposals, education/public awareness,
Outcomes covered: ICD9 codes 740-759, plus genetic,
                                                                      prevention projects
metabolic, and other disorders
Pregnancy outcome: live births (all gestational ages and birth        Funding
weights), fetal deaths—stillbirths, spontaneous abortions, etc.       Funding source: general state funds 20%, CDC grant 80%
(20 weeks gestation and greater, fetal death certificates are only
                                                                      Other
source of data), elective terminations (less than 20 week
                                                                      Surveillance reports on file: Missouri Birth Defects 1995-1999
gestation, 20 weeks gestation and greater), Surveillance of
terminations currently limited to NTDs, expansion in progress         Contacts
Age: up to one year after delivery                                    Janice M Bakewell, BA
Residence: in and out of state births to state residents              Research Analyst, Missouri Dept of Health, Health Data
                                                                      Analysis
Surveillance methods
                                                                      PO Box 570, 920 Wildwood
Case ascertainment: passive, multi-source
                                                                      Jefferson City, MO 65102
Case finding/identification sources:
                                                                      Phone: 573-751-6278
Vital records: birth certificates, death certificates, matched birth/
                                                                      Fax: 573-526-4102
death file, fetal death certificates
                                                                      E-mail: bakewj@dhss.state.mo.us
Other state based registries: programs for children with special
needs
Delivery hospitals: discharge summaries
Pediatric & tertiary care hospitals: discharge summaries,
specialty outpatient clinics
Other specialty facilities: prenatal diagnostic facilities
(ultrasound, etc.)
Other sources: enrollment data, Missouri Dept. of Mental
Health

Case Ascertainment
Coding: ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, pregnancy/
delivery complications
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage
Data collection: electronic file/report submitted by other
agencies (hospitals, etc.)
Database storage/management: SAS

Data Analysis
Data analysis software: SAS
                               STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                        S97

                                                         Montana
                                     Montana Birth Outcomes Monitoring System (MBOMS)

Program status: Currently collecting data                            Data Collection Methods and Storage
Start year: 1999                                                     Data collection: printed abstract/report submitted by other
Earliest year of available data: 2000                                agencies (hospitals, etc.), electronic file/report submitted by
Organizational location: Department of Health (Maternal and          other agencies (hospitals, etc.)
Child Health)                                                        Database storage/management: Oracle
Population covered annually: 11,000
                                                                     Data Analysis
Statewide: yes
                                                                     Data analysis software: Epi-Info, SPSS, SAS, MS Access
Current legislation or rule: none
                                                                     Quality assurance: comparison/verification between multiple
Case Definition                                                       data sources, clinical review, timeliness
Outcomes covered: Neural Tube Defects, Cleft lip/palate,             Data use and analysis: routine statistical monitoring, baseline
Congenital heart defects, Congenital hypothyroidism                  rates, rates by demographic and other variables, monitoring
Pregnancy outcome: live births ( 20 weeks gestation & 500            outbreaks and cluster investigations, epidemiologic studies
grams), fetal deaths—stillbirths, spontaneous abortions, etc. (20    (using only program data), identification of potential cases for
weeks gestation and greater, greater than 500grams)                  other epidemiologic studies, needs assessment, referral,
Age: Birth to age 3                                                  education/public awareness, prevention projects
Residence: in-state births and out of state births to MT residents   Funding
                                                                     Funding source: CDC grant 100%
Surveillance methods
Case ascertainment: combination of active and passive case           Contacts
ascertainment                                                        Denise Higgins
Case finding/identification sources:                                   Program Coordinator, FCHB/DPHHS
Vital records: birth certificates, death certificates, fetal death     P.O. Box 202951
certificates                                                          Helena, MT 59620-2951
Other state based registries: programs for children with special     Phone: 406-444-1216
needs, newborn hearing screening program, newborn                    Fax: 406-444-2606
biochemical screening program                                        E-mail: dehiggins@state.mt.us
Delivery hospitals: specialty outpatient clinics
                                                                     Jan Baker
Third party payers: Medicaid databases
                                                                     Newborn Screening Program Manager, FCHB/ DPHHS
Other specialty facilities: prenatal diagnostic facilities
                                                                     P.O. Box 202951
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/
                                                                     Helena, MT 59620-2951
clinical genetic facilities, maternal serum screening facilities
                                                                     Phone: 406-444-6858
Other sources: physician reports
                                                                     Fax: 406-444-2606
Case Ascertainment                                                   E-mail: jabaker@state.mt.us
Conditions warranting chart review in newborn period: any
birth certificate with a birth defect box checked
Conditions warranting a chart review beyond the newborn
period: cardiovascular condition, all infant deaths (excluding
prematurity), auditory/hearing conditions
Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, prenatal
diagnostic information, pregnancy/delivery complications,
exposures
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)
S98       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                            Nebraska
                                                  Nebraska Birth Defects Registry

Program status: Currently collecting data                           Data Collected
Start year: 1973                                                    Infant/fetus: identification information (name, address, date-of-
Earliest year of available data: 1973                               birth, etc.), demographic information (race/ethnicity, sex, etc.),
Organizational location: Nebraska Health & Human Services           birth measurements (weight, gestation, Apgars, etc.), birth defect
Regulation & Licensure Data Management Section                      diagnostic information
Population covered annually: 24,000 births annually                 Mother: identification information (name, address, date-of-birth,
Statewide: yes                                                      etc.), demographic information (race/ethnicity, sex, etc.),
Current legislation or rule: Laws 1972, LB 1203, §1, §2, §3,        gravidity/parity
§4 (alternate citation: Public Health and Welfare [Codes]           Father: identification information (name, address, date-of-birth,
§71-645, §71-646, §71-647, §71-648, §71-649)                        etc.), demographic information (race/ethnicity, sex, etc.)
Legislation year enacted: 1972                                      Data Collection Methods and Storage
                                                                    Data collection: printed abstract/report filled out by staff,
Case Definition                                                      printed abstract/report submitted by other agencies (hospitals,
Outcomes covered: All birth defects, exclusions according to        etc.), electronic file/report submitted by other agencies
CDC exclusion list                                                  (hospitals, etc.)
Pregnancy outcome: live births (greater than 20 weeks and           Database storage/management: SAS, Key-entry 3
greater than 500 grams), fetal deaths—stillbirths, spontaneous
abortions, etc. (20 weeks gestation and greater)                    Data Analysis
                                                                    Data analysis software: SAS
Age: Birth to 1 year
                                                                    Quality assurance: re-abstraction of cases, double-checking of
Residence: In-state and out-of-state birth to state resident
                                                                    assigned codes, comparison/verification between multiple data
Surveillance methods                                                sources, Case finding, data coding and entry
Case ascertainment: Combination of active and passive case          Data use and analysis: baseline rates, monitoring outbreaks and
                                                                    cluster investigations, epidemiologic studies (using only program
ascertainment.
                                                                    data), identification of potential cases for other epidemiologic
Case finding/identification sources:
                                                                    studies, needs assessment, grant proposals, Incidence rates, trend
Vital records: birth certificates, death certificates, fetal death
                                                                    analysis, birth defect reg.
certificates
Delivery hospitals: chart review, disease index or discharge        Funding
index, discharge summaries, ICU/NICU logs or charts, Nebraska       Funding source: MCH funds 100%
Birth Defects Prevention Program Congenital Defects Case
                                                                    Other
Record
                                                                    Surveillance reports on file: 2000 report in Vital Statistics
Pediatric & tertiary care hospitals: chart review, disease          Report. 2001 report will be available in published form in
index or discharge index, discharge summaries, ICU/NICU             August 2002.
logs or charts, specialty outpatient clinics, Nebraska              Additional information on file: Copy of legislation, congenital
Birth Defects Prevention Program Congenital Defects Case            defects case record form
Record                                                              Comments: State legislation introduced to allow release of
Other specialty facilities: genetic counseling/clinical genetic     patient-identifying information to approved researcher for the
facilities                                                          purpose of research; development of a system so that hospitals
Other sources: physician reports                                    may use the electronic birth certificate to initially alert the
                                                                    surveillance program of the birth of a child with an anomaly.
Case Ascertainment
Conditions warranting chart review in newborn period: any           Contacts
chart with a ICD9-CM code 740-759, any chart with selected          Carla M. Becker, RHIA
defects or medical conditions ie abnormal facies, congenital        Health Data Manager
                                                                    Nebraska Health and Human Services System
heart disease, any birth certificate with a birth defect box
                                                                    301 Centennial Mall South P.O. Box 95007
checked
                                                                    Lincoln, NE 68509-5007
Conditions warranting a chart review beyond the newborn
                                                                    Phone: 402-471-3575
period: facial dysmorphism or abnormal facies, CNS condition
                                                                    Fax: 402-471-9728
(ie seizure), GI condition (ie intestinal blockage), GU condition
                                                                    E-mail: carla.becker@hhss.state.ne.us
(ie recurrent infections), cardiovascular condition, ocular
conditions, auditory/hearing conditions, any infant with a
codable defect
Coding: CDC coding system based on BPA
                               STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                     S99

                                                             Nevada
                                                   Nevada Birth Defects Registry

Program status: Currently collecting data                           Data Collected
Start year: 2000                                                    Infant/fetus: identification information (name, address, date-of-
Earliest year of available data: 2000                               birth, etc.), demographic information (race/ethnicity, sex, etc.),
Organizational location: Department of Health (Maternal and         birth measurements (weight, gestation, Apgars, etc.), birth defect
Child Health)                                                       diagnostic information
Population covered annually: 30,000                                 Mother: identification information (name, address, date-of-birth,
Statewide: no, Year 2000 data is for Las Vegas only. Year 2001      etc.), demographic information (race/ethnicity, sex, etc.),
- Las Vegas data complete, Reno area in the process of being        illnesses/conditions, prenatal care, prenatal diagnostic
completed.                                                          information, pregnancy/delivery complications, family history
Current legislation or rule: NRS 442.300 - 442.330 - Birth          Father: identification information (name, address, date-of-birth,
                                                                    etc.), demographic information (race/ethnicity, sex, etc.),
Defects Registry Legislation *** Regulation NAC 442
                                                                    illnesses/conditions, family history
Legislation year enacted: 1999
                                                                    Data Collection Methods and Storage
Case Definition                                                      Data collection: printed abstract/report filled out by staff,
Outcomes covered: major birth defects and genetic diseases          electronic file/report filled out by staff at facility (laptop, web-
Pregnancy outcome: live births (all gestational ages and birth      based, etc.)
weights), fetal deaths (20 weeks gestation and greater), elective   Database storage/management: MS Access, Oracle, SAS,
terminations (20 weeks gestation and greater)                       Mainframe
Age: Cover from 0-7 years of age
                                                                    Data Analysis
Residence: In-state births
                                                                    Data analysis software: SPSS, SAS
Surveillance methods                                                Quality assurance: double-checking of assigned codes,
Case ascertainment: Combination of active and passive               comparison/verification between multiple data sources,
                                                                    data/hospital audits
ascertainment
                                                                    Data use and analysis: routine statistical monitoring, baseline
Case finding/identification sources:
                                                                    rates, rates by demographic and other variables, monitoring
Vital records: birth certificates, matched birth/death file,
                                                                    outbreaks and cluster investigations, epidemiologic studies
Hospital medical records
                                                                    (using only program data), identification of potential cases for
Other state based registries: programs for children with special
                                                                    other epidemiologic studies, needs assessment, service delivery,
needs, newborn hearing screening program, newborn
                                                                    referral, grant proposals, education/public awareness, prevention
biochemical screening program, cancer registry
                                                                    projects
Delivery hospitals: chart review, disease index or discharge
index, discharge summaries, obstetrics logs (i.e., labor &          Contacts
delivery), regular nursery logs, ICU/NICU logs or charts            Judith Wright
Pediatric & tertiary care hospitals: chart review, disease index    Bureau Chief, Bureau of Family Health Services - State
or discharge index                                                  Health Division
Third party payers: Medicaid databases                              505 E. King Street
Other specialty facilities: genetic counseling/clinical genetic     Carson City, NV 89701
facilities                                                          Phone: (775) 684-4285
Other sources: physician reports, State sponsored specialty         Fax: (775) 684-4245
clinics                                                             E-mail: jwright@nvhd.state.nv.us

Case Ascertainment                                                  Gloria Deyhle M. Deyhle, Rn, BA
Conditions warranting chart review in newborn period: any           Health Program Sepcialist, Nevada State Health Division
chart with a ICD9-CM code 740-759, any chart with a selected        505 E. King Street
list of ICD9-CM codes outside 740-759, any chart with selected      Carson City, NV 89701
defects or medical conditions ie abnormal facies, congenital        Phone: (775) 684-4243
heart disease, any birth certificate with a birth defect box         Fax: (775) 684-4245
checked                                                             E-mail: gdeyhle@nvhd.state.nv.us
Conditions warranting a chart review beyond the newborn
period: facial dysmorphism or abnormal facies, CNS condition
(ie seizure), GI condition (ie intestinal blockage), GU condition
(ie recurrent infections), cardiovascular condition, any infant
with a codable defect
Coding: ICD-9-CM
S100        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                    New Hampshire
                       New Hampshire Birth Defects Monitoring And Prevention Program (NH BDMPP)

Program status: Program has not started collecting data                birth measurements (weight, gestation, Apgars, etc.), infant
Start year: 2002                                                       complications, birth defect diagnostic information
Earliest year of available data: 2003                                  Mother: identification information (name, address, date-of-birth,
Organizational location: Department of Health (Vital Statistics),      etc.), demographic information (race/ethnicity, sex, etc.),
Department of Health (Maternal and Child Health), Bureau of            gravidity/parity, illnesses/conditions, prenatal care, prenatal
WIC Nutrition Services, University                                     diagnostic information, pregnancy/delivery complications,
Population covered annually: 13,560                                    exposures, family history
Statewide: yes                                                         Father: identification information (name, address, date-of-birth,
Current legislation or rule: None                                      etc.), demographic information (race/ethnicity, sex, etc.)

Case Definition                                                         Data Collection Methods and Storage
Outcomes covered: All major birth defects and multiple                 Data collection: electronic file/report filled out by staff at
congenital anomaly syndromes                                           facility (laptop, web-based, etc.)
Pregnancy outcome: live births (all gestational ages and birth         Database storage/management: MS Access, investigating web-
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        based data base solutions
(20 weeks gestation and greater), elective terminations (20
                                                                       Data Analysis
weeks gestation and greater)
                                                                       Data analysis software: SPSS, SAS, MS Access, STATA
Age: all fetuses 20 weeks gestation and newborns to the time
                                                                       Quality assurance: validity checks, re-abstraction of cases,
of discharge from birthing hospital or ICN
                                                                       double-checking of assigned codes, comparison/verification
Residence: in- and out-of-state births to state residents
                                                                       between multiple data sources, clinical review, timeliness
Surveillance methods                                                   Data use and analysis: routine statistical monitoring, baseline
Case ascertainment: active case ascertainment and population           rates, rates by demographic and other variables, monitoring
based                                                                  outbreaks and cluster investigations, time trends, epidemiologic
Case finding/identification sources:                                     studies (using only program data), identification of potential
Vital records: birth certificates, death certificates, fetal death       cases for other epidemiologic studies, needs assessment, service
certificates                                                            delivery, referral, grant proposals, education/public awareness,
Other state based registries: programs for children with special       prevention projects
needs, newborn genetic screening program, newborn hearing
                                                                       Funding
screening program, cancer registry, AIDS/HIV registry
                                                                       Funding source: CDC grant 77%, private foundations 23%
Delivery hospitals: chart review, discharge summaries, regular
nursery logs, ICU/NICU logs or charts, postmortem/pathology            Contacts
logs                                                                   John B. Moeschler, M.D.
Pediatric & tertiary care hospitals: chart review, discharge           Project Director, Division of Genetics and Child
summaries, ICU/NICU logs or charts, postmortem/pathology               Development, Dept. of PediatricsDartmouth Hitchcock
logs, specialty outpatient clinics, cytogenetics laboratory,           Medical Center
perinatal pathology logs, Medical Genetics Clinic files,                1 Medical Center Drive
molecular genetics laboratory, Prenatal Diagnosis Program files         Lebanon, NH 03756
Other specialty facilities: prenatal diagnostic facilities             Phone: 603-650-7886
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/      Fax: 603-6508268
clinical genetic facilities, maternal serum screening facilities       E-mail: John.Moeschler@Dartmouth.edu
Case Ascertainment                                                     Victoria Flanagan, R.N., B.S.N.
Conditions warranting chart review in newborn period: any              Project Coordinator, Dept. of PediatricsDartmouth Hitchcock
chart with a ICD9-CM code 740-759, any chart with a selected           Medical Center
list of ICD9-CM codes outside 740-759, any chart with a CDC/           1 Medical Center Drive
BPA code, any chart with selected defects or medical conditions        Lebanon, NH 03756
ie abnormal facies, congenital heart disease, any birth certificate     Phone: 603-650-6137
with a birth defect box checked, all stillborn infants, all neonatal   Fax: 603-650-8268
deaths, all infants in NICU or special care nursery, all prenatal      E-mail: Victoria.A.Flanagan@Hitchcock.ORG
diagnosed or suspected cases
Coding: CDC coding system based on BPA, ICD-9-CM                       Stacey Smith, BS
                                                                       Project Coordinator, New Hampshire DHHS, WIC Nutrition
Data Collected                                                         Services
Infant/fetus: identification information (name, address, date-of-       6 Hazen Drive
birth, etc.), demographic information (race/ethnicity, sex, etc.),     Concord, NH 03301
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S101

Phone: 603-271-0571
Fax: 603-271-4779
E-mail: slsmith@dhhs.state.nh.us
S102        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                           New Jersey
                                      Special Child Health Services Registry (SCHS REGIS)

Program status: Currently collecting data                             Other sources: physician reports, Special Child Health Services
Start year: 1928                                                      county based Case Management units, parents, schools, medical
Earliest year of available data: 1985                                 examiners
Organizational location: Department of Health & Senior
                                                                      Case Ascertainment
Services - Special Child, Adult, and Early Intervention Services
                                                                      Conditions warranting chart review in newborn period: any
Population covered annually: 113,500
                                                                      chart with a ICD9-CM code 740-759, any chart with a ICD9-
Statewide: yes
                                                                      CM codes in addition to 740-759, any chart with a selected list
Current legislation or rule: NJSA 26:8 et seq., NJAC 8:20 -
                                                                      of ICD9-CM codes outside 740-759, all neonatal deaths, all
Enacted 08-04-1983, with effective date of 03-04-1985. Changes
                                                                      death certificates for 1 year of age
to legislation 1990, 1991, 1992. Readopted 05/2000.
                                                                      Conditions warranting a chart review beyond the newborn
Legislation year enacted: 1983
                                                                      period: GI condition (ie intestinal blockage), GU condition (ie
Case Definition                                                        recurrent infections), cardiovascular condition, all infant deaths
Outcomes covered: All birth defects, including structural,            (excluding prematurity), ocular conditions, any infant with a
genetic, and biochemical are required to be reported. While not       codable defect
mandated, all special needs and any condition which places a          Coding: ICD-9-CM
child at risk, eg. prematurity, asthma, cancer, developmental
                                                                      Data Collected
delay, are also reported.
                                                                      Infant/fetus: identification information (name, address, date-of-
Pregnancy outcome: live births (all gestational ages and birth
                                                                      birth, etc.), demographic information (race/ethnicity, sex, etc.),
weights)
                                                                      birth measurements (weight, gestation, Apgars, etc.), birth defect
Age: mandated reporting of birth defects diagnosed
                                                                      diagnostic information
age 1, voluntary reporting of birth defects diagnosed age 1
                                                                      Mother: identification information (name, address, date-of-birth,
and all children diagnosed with Special Needs conditions who
                                                                      etc.)
are 21 yrs. of age
                                                                      Father: identification information (name, address, date-of-birth,
Residence: in/out NJ births to NJ res; because of our link to the
                                                                      etc.)
SCHS Case Management system, we also enroll anyone
becoming NJ res                                                       Data Collection Methods and Storage
                                                                      Data collection: printed abstract/report filled out by staff,
Surveillance methods                                                  printed abstract/report submitted by other agencies (hospitals,
Case ascertainment: Passive, population based reporting system        etc.)
with annual quality assurance visits by BDR staff to birthing         Database storage/management: SAS
hospitals, birthing centers and, pediatric care facilities. Medical
chart review is conducted on all children registered with any of      Data Analysis
the defects used by Centers of Excellence Interviews.                 Data analysis software: SAS, MS Access
Case finding/identification sources:                                    Quality assurance: validity checks, double-checking of assigned
Vital records: birth certificates, death certificates, matched birth/   codes, comparison/verification between multiple data sources,
death file                                                             data/hospital audits, clinical review, timeliness, merge registry
Other state based registries: programs for children with special      with birth certificate registry and the death certificate registry
needs, newborn hearing screening program, newborn                     Data use and analysis: routine statistical monitoring, baseline
biochemical screening program, AIDS/HIV registry                      rates, rates by demographic and other variables, monitoring
Delivery hospitals: chart review, disease index or discharge          outbreaks and cluster investigations, epidemiologic studies
index, discharge summaries, obstetrics logs (i.e., labor &            (using only program data), identification of potential cases for
delivery), regular nursery logs, ICU/NICU logs or charts,             other epidemiologic studies, needs assessment, service delivery,
pediatric logs, postmortem/pathology logs, surgery logs, cardiac      referral, grant proposals, education/public awareness, prevention
catheterization laboratories, specialty outpatient clinics, Quality   projects
Assurance visit consisting of chart review of 3 month period          Funding
Pediatric & tertiary care hospitals: chart review, disease index      Funding source: MCH funds 85%, CDC grant 10%, dedicated
or discharge index, discharge summaries, ICU/NICU logs or             state funds 5%
charts, pediatric logs, postmortem/pathology logs, surgery logs,
laboratory logs, cardiac catheterization laboratories, specialty      Other
outpatient clinics, Quality Assurance visit consisting of chart       Web site: http://www.state.nj.us/health/fhs/scregis.htm
review of 3 month period                                              Surveillance reports on file: Special Child Health Services
Midwifery facilities:                                                 Registry 1985-1989; Special Child Health Services Registry
Other specialty facilities: cytogenetic laboratories, genetic         1985-1991; Special Child Health Services Registry 1985-1994;
counseling/clinical genetic facilities                                Special Child Health Services Registry 1990-1999 (in press).
                             STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S103

Procedure manual available: yes
Additional information on file: Information sheet, case record
form, copy of legislation, quality assurance audit information

Contacts
Leslie M. Beres, MSHyg
Acting Program Manager, Research Scientist, SCAEIS, New
Jersey Department of Health and Senior Services
PO 364
Trenton, NJ 08625-0364
Phone: 609-292-5676
Fax: 609-292-9288
E-mail: Leslie.Beres-Sochka@doh.state.nj.us

Marjorie Royle, Ph. D.
Research Scientist, New Jersey Department of Health and
Senior Services
PO 364
Trenton, NJ 08625
Phone: 609-292-5676
Fax: 609-292-9288
E-mail: Marjorie.Royle@doh.state.nj.us

Mary M. Knapp, MSN
New Jersey Coordinator, New Jersey Department of Health and
Senior Services
PO 364
Trenton, NJ 08625-0364
Phone: 609-292-5676
Fax: 609-292-3580
E-mail: mary.knapp@doh.state.nj.us

Donald C. Finn, MBA
Research Scientist, New Jersey Department of Health and
Senior Services
PO 364
Trenton, NJ 08625
Phone: 609-292-5676
Fax: 609-292-9288
E-mail: Donald.Finn@doh.state.nj.us
S104        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                       New Mexico
                         New Mexico Birth Defects Prevention And Surveillance System (NMBDPASS)

Program status: Currently collecting data                            Conditions warranting a chart review beyond the newborn
Start year: 1995                                                     period: any infant with a codable defect
Earliest year of available data: 1995                                Coding: ICD-9-CM
Organizational location: Department of Health (Maternal and
Child Health)                                                        Data Collected
Population covered annually: 27,000                                  Infant/fetus: identification information (name, address, date-of-
Statewide: yes                                                       birth, etc.), demographic information (race/ethnicity, sex, etc.),
Current legislation or rule: In January 2000, birth defects          birth measurements (weight, gestation, Apgars, etc.), infant
                                                                     complications, birth defect diagnostic information
became a reportable condition. These conditions are updated by
                                                                     Mother: identification information (name, address, date-of-birth,
the Office of Epidemiology. This did not involve legislation,
                                                                     etc.), demographic information (race/ethnicity, sex, etc.),
only a a change in regs.
                                                                     gravidity/parity, illnesses/conditions, prenatal care, prenatal
Legislation year enacted: January 1, 2000
                                                                     diagnostic information, pregnancy/delivery complications,
                                                                     exposures, family history
Case Definition
                                                                     Father: identification information (name, address, date-of-birth,
Outcomes covered: 740-760.71
                                                                     etc.), demographic information (race/ethnicity, sex, etc.)
Pregnancy outcome: live births (all gestational ages and birth
weights), fetal deaths—stillbirths, spontaneous abortions, etc.      Data Collection Methods and Storage
(less than 20 week gestation, 20 weeks gestation and greater),       Data collection: printed abstract/report filled out by staff,
elective terminations (less than 20 week gestation, 20 weeks         printed abstract/report submitted by other agencies (hospitals,
gestation and greater)                                               etc.), electronic file/report filled out by staff at facility (laptop,
Age: age 14                                                          web-based, etc.), electronic file/report submitted by other
Residence: In and out of state births to state residents, New        agencies (hospitals, etc.)
Mexico                                                               Database storage/management: MS Access

Surveillance methods                                                 Data Analysis
Case ascertainment: Active case ascertainment for NTDs and           Data analysis software: Stata
oral facial clefts; passive for other defects                        Quality assurance: validity checks, re-abstraction of cases,
Case finding/identification sources:                                   double-checking of assigned codes, comparison/verification
Vital records: birth certificates                                     between multiple data sources, data/hospital audits, timeliness
Other state based registries: programs for children with special     Data use and analysis: routine statistical monitoring, baseline
needs, newborn genetic screening program, newborn hearing            rates, rates by demographic and other variables, time trends,
screening program, cancer registry, Children’s Chronic               needs assessment, grant proposals, education/public awareness,
Conditions Registry                                                  prevention projects, Beginning to develop linkage with early
Delivery hospitals: chart review, obstetrics logs (i.e., labor &     intervention services (IDEA Part C) and exploring ways to work
delivery), ICU/NICU logs or charts, specialty outpatient             with Medicaid to link children to medical home and case-
clinics                                                              management.
Pediatric & tertiary care hospitals: chart review, ICU/NICU
logs or charts, specialty outpatient clinics, Abstractors contact    Funding
neurosurgeons quarterly to identify all NTD cases. Also contact      Funding source: general state funds 16%, MCH funds 25%,
plastic surgeons to identify children with OFCs.                     CDC grant 59%
Third party payers: Medicaid databases, health maintenance
organizations (HMOs), Indian health services, Children’s             Other
Medical Services                                                     Surveillance reports on file: 1995-1996 Report of birth
Other specialty facilities: prenatal diagnostic facilities           defects1997-1998 Report of birth defects1995-1999 Report of
(ultrasound, etc.), genetic counseling/clinical genetic facilities   birth defects (in press)
Other sources: physician reports, Children’s Chronic
Condition’s Registry                                                 Contacts
                                                                     Margaret M. Gallaher, MD, MPH
Case Ascertainment                                                   Medical Director, NM Dept. of Health, Children
Conditions warranting chart review in newborn period: any            2040 S. Pacheco
chart with a ICD9-CM code 740-759, any chart with a ICD9-            Santa Fe, NM 87505
CM codes in addition to 740-759, any birth certificate with a         Phone: 505-476-8854
birth defect box checked, all prenatal diagnosed or suspected        Fax: 505-476-8896
cases, Charts with ICD code 760.71                                   E-mail: MGallaher@doh.state.nm.us
                           STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S105

Sandra Baxter, MSW
Manager, Children’s Medical Services
2040 S. Pacheco
Santa Fe, NM 87505
Phone: 505-476-8859
Fax: 505-476-8896
E-mail: SBaxter@doh.state.nm.us
S106        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                          New York
                                     New York State Congenital Malformations Registry (CMR)

Program status: Currently collecting data                              Quality assurance: comparison/verification between multiple
Start year: 1982                                                       data sources, data/hospital audits
Earliest year of available data: 1983                                  Data use and analysis: routine statistical monitoring, baseline
Organizational location: Department of Health (Epidemiology/           rates, rates by demographic and other variables, monitoring
Environment)                                                           outbreaks and cluster investigations, time trends, time-space
Population covered annually: 260,000                                   cluster analyses, observed vs expected analyses, epidemiologic
Statewide: yes                                                         studies (using only program data), identification of potential
Current legislation or rule: Public Health Law Art. 2, Title, II,      cases for other epidemiologic studies, needs assessment, service
Sect 225(5)(t) and Art. 2 Title I, sect 206(1)(j): Codes, Rules        delivery, grant proposals, education/public awareness, prevention
and Regulations,Chap 1, State Sanitary Code, part 22.3                 projects
Legislation year enacted: 1982
                                                                       Funding
Case Definition                                                         Funding source: MCH funds 41%, CDC grant 49%, other
Outcomes covered: Major malformations, detailed list available         federal funding (non-CDC grant) 10%
upon request.
Pregnancy outcome: live births (all gestational ages and birth         Other
weights)                                                               Web site:
Age: 2 years                                                           http://www.health.state.ny.us/nysdoh/cmr/cmrhome.htm
Residence: In-state and out-of-state birth to state resident; in-      Surveillance reports on file: Reports for 1983-1997.
state birth to nonresident; all children born in or residing in        Procedure manual available: yes
New York, up to age 2.                                                 Contacts
Surveillance methods                                                   Philip K. Cross
Case ascertainment: combination of active and passive case             Director, Congenital Malformations Registry, New York
ascertainment                                                          Department of Health
Case finding/identification sources:                                     Flanigan Square, Room 200; 547 River Street
Vital records:                                                         Troy, NY 12180
Delivery hospitals: disease index or discharge index, ICU/NICU         Phone: 518-402-7990
logs or charts                                                         Fax: 518-402-7959
Pediatric & tertiary care hospitals: disease index or discharge        E-mail: pkc02@health.state.ny.us
index, ICU/NICU logs or charts                                         Charlotte Druschel, MD, MPH
Other sources: physician reports, hospital discharge data              Medical Director, Center for Environmental Health, New York
Case Ascertainment                                                     Department of Health
Conditions warranting chart review in newborn period: charts           Flanigan Square, Room 200; 547 River Street
with selected ICD-9CM codes in the 740-759                             Troy, NY 12180
Coding: CDC coding system based on BPA, ICD-9-CM                       Phone: 518-402-7990
Data Collected                                                         Fax: 518-402-7959
Infant/fetus: identification information (name, address, date-of-       E-mail: cmd05@health.state.ny.us
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, birth defect diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)
Data Collection Methods and Storage
Data collection: printed abstract/report submitted by other
agencies (hospitals, etc.), electronic file/report filled out by staff
at facility (laptop, web-based, etc.), electronic file/report
submitted by other agencies (hospitals, etc.)
Database storage/management: MS Access, FoxPro, SAS,
Sybase
Data Analysis
Data analysis software: SAS, MS Access, Visual FoxPro
                              STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                        S107

                                                        North Carolina
                                  North Carolina Birth Defects Monitoring Program (NCBDMP)

Program status: Currently collecting data                             gravidity/parity, illnesses/conditions, prenatal care, prenatal
Start year: 1987                                                      diagnostic information, pregnancy/delivery complications
Earliest year of available data: 1989                                 Father: identification information (name, address, date-of-birth,
Organizational location: Department of Health (Vital Statistics)      etc.), demographic information (race/ethnicity, sex, etc.)
Population covered annually: 120,000
                                                                      Data Collection Methods and Storage
Statewide: yes
                                                                      Data collection: printed abstract/report filled out by staff,
Current legislation or rule: NCGS 130A-131
                                                                      printed abstract/report submitted by other agencies (hospitals,
Legislation year enacted: 1995
                                                                      etc.), electronic file/report filled out by staff at facility (laptop,
Case Definition                                                        web-based, etc.), electronic file/report submitted by other
Outcomes covered: Major birth defects                                 agencies (hospitals, etc.)
Pregnancy outcome: live births (all gestational ages and birth        Database storage/management: MS Access, SAS, Mainframe
weights), fetal deaths—stillbirths, spontaneous abortions, etc.
                                                                      Data Analysis
(20 weeks gestation and greater), elective terminations (less than
                                                                      Data analysis software: SAS, MS Access
20 week gestation, 20 weeks gestation and greater). Program
                                                                      Quality assurance: validity checks, double-checking of assigned
currently monitors terminations for NTDs only
                                                                      codes, comparison/verification between multiple data sources,
Age: Up to one year after delivery
                                                                      timeliness
Residence: NC resident births, in-state and out-of-state
                                                                      Data use and analysis: routine statistical monitoring, baseline
occurrence
                                                                      rates, rates by demographic and other variables, time trends,
Surveillance methods                                                  capture-recapture analyses, epidemiologic studies (using only
Case ascertainment: Population-based, combined active and             program data), identification of potential cases for other
passive ascertainment                                                 epidemiologic studies, needs assessment, referral, grant
Case finding/identification sources:                                    proposals, education/public awareness, prevention projects,
Vital records: birth certificates, death certificates, matched birth/   advocacy
death file, fetal death certificates
                                                                      Funding
Other state based registries: programs for children with special
                                                                      Funding source: general state funds 76%, CDC grant 24%
needs
Delivery hospitals: chart review, disease index or discharge          Other
index, discharge summaries                                            Web site: www.schs.state.nc.us/SCHS
Pediatric & tertiary care hospitals: chart review, disease index      Surveillance reports on file: Annual reports, Special studies
or discharge index, discharge summaries
                                                                      Contacts
Third party payers: Medicaid databases
                                                                      Robert E. Meyer, PhD
Other specialty facilities: prenatal diagnostic facilities
                                                                      NCBDMP Director, North Carolina Center for Health
(ultrasound, etc.), genetic counseling/clinical genetic facilities
                                                                      Statistics
Other sources: Hospital-based newborn discharge planners
                                                                      1908 Mail Service Center
Case Ascertainment                                                    Raleigh, NC 27699-1908
Conditions warranting chart review in newborn period: any             Phone: 919.715.4476
chart with a ICD9-CM code 740-759, any chart with a ICD9-             Fax: 919.733.8485
CM codes in addition to 740-759, any chart with a selected list       E-mail: robert.meyer@ncmail.net
of ICD9-CM codes outside 740-759, any chart with selected
procedure codes, any birth certificate with a birth defect box
checked, all stillborn infants, all prenatal diagnosed or suspected
cases
Conditions warranting a chart review beyond the newborn
period: any infant with a codable defect
Coding: ICD-9-CM, Modification of ICD-9-CM, ICD-10

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), infant
complications, birth defect diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
S108        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                            North Dakota

Program status: In process of developing a system                    Father: identification information (name, address, date-of-birth,
Earliest year of available data: N/A                                 etc.), demographic information (race/ethnicity, sex, etc.)
Organizational location: Department of Health (Vital Statistics),
                                                                     Data Collection Methods and Storage
Department of Health (Maternal and Child Health), ND
                                                                     Data collection: printed abstract/report submitted by other
Department of Human Services (Children’s Special Health
                                                                     agencies (hospitals, etc.), electronic file/report submitted by
Services)
                                                                     other agencies (hospitals, etc.)
Population covered annually: 7676
                                                                     Database storage/management: MS Access, Mainframe, Db2,
Statewide: yes
                                                                     SPSS, Excel
Current legislation or rule: N/A
Legislation year enacted: N/A                                        Data Analysis
Case Definition                                                       Data analysis software: SPSS
Outcomes covered: selected birth defects (NTDs, congenital           Quality assurance: comparison/verification between multiple
heart defects, cleft lip and palate) and other risk factors that     data sources
may lead to health and developmental problems.                       Data use and analysis: routine statistical monitoring, baseline
Pregnancy outcome: live births (all gestational ages and birth       rates, rates by demographic and other variables, time trends,
weights, numbers collected and reported via Vital Records),          needs assessment, service delivery, referral, grant proposals,
fetal deaths—stillbirths, spontaneous abortions, etc. (20 weeks      education/public awareness, prevention projects
gestation and greater, numbers collected and reported via Vital      Funding
Records), elective terminations (less than 20 week gestation, 20     Funding source: No funding specifically directed to birth
weeks gestation and greater, numbers collected and reported via      defects
Vital Records)
Age: Newborn period                                                  Other
Residence: In-state resident births                                  Web site: www.health.state.nd.us/ndhd/admin/vital/
                                                                     Procedure manual available: yes
Surveillance methods
                                                                     Comments: Birth Review Program only
Case ascertainment: passive
Case finding/identification sources:                                   Contacts
Vital records: birth certificates                                     Terry Bohn
Other state based registries: programs for children with special     SSDI Coordinator, Division of Maternal & Child Health
needs, newborn genetic screening program, newborn hearing            600 East Boulevard Avenue, Dept. 301
screening program, newborn biochemical screening program,            Bismarck, ND 58505-0200
cancer registry, AIDS/HIV registry, FAS                              Phone: 701-328-4963
Delivery hospitals: Birth certificate completion                      Fax: 701-328-1412
Pediatric & tertiary care hospitals: specialty outpatient clinics    E-mail: tbohn@state.nd.us
Third party payers: Medicaid databases, health maintenance
organizations (HMOs), private insurers
Other specialty facilities: genetic counseling/clinical genetic
facilities
Other sources: physician reports
Case Finding/Case Data Collection Outside of the State: Yes,
program has data sharing agreement(s) with other state(s) or
conduct case finding or data collection in another state.
Case Ascertainment
Coding: ICD-9-CM, ICD 10
Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, prenatal
diagnostic information, pregnancy/delivery complications,
exposures, family history
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S109

                                                      Ohio

Program status: Interested in a developing a system

Contacts
Sharon M. Linard, MS
Epidemiologist, Ohio Department of Health
246 N. High Street
Columbus, OH 43216
Phone: 614-727-9293
E-mail: slinard@gw.odh.state.oh.us
S110        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                           Oklahoma
                                             Oklahoma Birth Defects Registry (OBDR)

Program status: Currently collecting data                            gravidity/parity, illnesses/conditions, prenatal care, prenatal
Start year: 1992                                                     diagnostic information, exposures, family history
Earliest year of available data: 1992                                Father: identification information (name, address, date-of-birth,
Organizational location: Department of Health (Maternal and          etc.), demographic information (race/ethnicity, sex, etc.), family
Child Health)                                                        history
Population covered annually: 48,000
                                                                     Data Collection Methods and Storage
Statewide: yes
                                                                     Data collection: printed abstract/report filled out by staff
Current legislation or rule: 63 O.S. Section 1-550.2
                                                                     Database storage/management: MS Access
Legislation year enacted: 1992
Case Definition                                                       Data Analysis
Outcomes covered: modified 6-digit ICD-9-CM codes for birth           Data analysis software: SAS, MS Access, ArcView GIS
defects and genetic diseases                                         Quality assurance: validity checks, re-abstraction of cases,
Pregnancy outcome: live births,         20 weeks gestation, fetal    double-checking of assigned codes, timeliness, Editing of all
deaths—stillbirths, spontaneous abortions, etc. (20 weeks            completed abstracts
gestation and greater), elective terminations (20 weeks gestation    Data use and analysis: routine statistical monitoring, baseline
and greater)                                                         rates, rates by demographic and other variables, monitoring
Age: 2 years                                                         outbreaks and cluster investigations, time-space cluster analyses,
Residence: In-state births to state residents                        needs assessment, referral, grant proposals, education/public
                                                                     awareness, prevention projects, Program quality assurance
Surveillance methods
Case ascertainment: population based, active case ascertainment      Funding
Case finding/identification sources:                                   Funding source: general state funds 25%, MCH funds 58%,
Vital records: birth certificates, death certificates, fetal death     CDC grant 17%
certificates
                                                                     Other
Delivery hospitals: chart review, disease index or discharge
                                                                     Surveillance reports on file: 1992 & 1993 Annual Report -
index, obstetrics logs (i.e., labor & delivery), regular nursery
                                                                     combined for Oklahoma, Tulsa and Cleveland Counties
logs, ICU/NICU logs or charts, pediatric logs, surgery logs,
                                                                     Procedure manual available: yes
specialty outpatient clinics
                                                                     Additional information on file: PRAMS Gram Vol 8 No 3:
Pediatric & tertiary care hospitals: chart review, disease index
                                                                     Folic Acid Knowledge and Multivitamin Use Among Oklahoma
or discharge index, pediatric logs, surgery logs, specialty
                                                                     Women; provisional rate tables for 1994-1997.
outpatient clinics
                                                                     Comments: Additional information for case definitions
Midwifery facilities:
                                                                     residence: 1995 began abstraction of Oklahoma residents born in
Third party payers: Indian health services, Military hospitals
                                                                     Fort Smith
delivering babies
Other specialty facilities: prenatal diagnostic facilities           Contacts
(ultrasound, etc.), cytogenetic laboratories                         Kay A. Pearson, MS
Case Finding/Case Data Collection Outside of the State: Yes,         Birth Defects Registry Coordinator, Oklahoma Department
program has data sharing agreement(s) with other state(s) or         of Health
conduct case finding or data collection in another state.             1000 NE 10th Street, Room 710
Case Ascertainment                                                   Oklahoma City, OK 73117-1299
Conditions warranting chart review in newborn period: any            Phone: 405-271-9444 Ex 56744
chart with a ICD9-CM code 740-759, any chart with a selected         Fax: 405-271-4892
list of ICD9-CM codes outside 740-759, any chart with a CDC/         E-mail: kayp@health.state.ok.us
BPA code
Conditions warranting a chart review beyond the newborn
period: any infant with a codable defect
Coding: CDC coding system based on BPA
Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), birth defect
diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
                           STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S111

                                               Oregon

Program status: No surveillance program

Contacts
Kenneth D. Rosenberg, MD, MPH
MCH Epidemiologist, Oregon Health Department
800 NE Oregon Street #21, Suite 850
Portland, OR 97232
Phone: 503-731-4507
Fax: 503-731-4083
E-mail: ken.d.rosenberg@state.or.us
S112        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                       Pennsylvania
              Pennsylvania Follow-Up, Outreach, Referral And Education For Families (PA-FORE FAMILIES)

Program status: Interested in developing a program                    above-specified IC9 code range and link them with early
Start year: 2002                                                      intervention and other appropriate services. The project will
Organizational location: Division of Newborn Disease                  collect data from birth certificates and data pertaining to
Prevention and Identification                                          children enrolled in programs administered by the Bureau of
Population covered annually: 145,000                                  Family Health. These include the genetics program, metabolic
Statewide: yes                                                        program, newborn hearing screening program, and special
                                                                      healthcare needs programs. The project will also review hospital
Case Definition
                                                                      discharge and outpatient data available through the Health Care
Outcomes covered: 740-759.9 and 760.71 ICD-9
                                                                      Cost Containment Council.
Pregnancy outcome: live births (all gestational ages and birth
weights), fetal deaths—stillbirths, spontaneous abortions, etc.       Contacts
Age: birth to two years of age                                        Robert Staver
Residence: in-state births to state residents                         Public Health Program Administrator, Pennsylvania
                                                                      Department of Health
Surveillance methods
                                                                      P.O. Box 90, 7th floor East Wing
Case ascertainment: population-based
                                                                      Harrisburg, PA 17108
Case finding/identification sources:
                                                                      Phone: 717-783-8143
Vital records: birth certificates, death certificates, matched birth/
                                                                      Fax: 717-772-0323
death file, Health Care Cost Containment Council data
                                                                      E-mail: rstaver@state.pa.us
Other state based registries: programs for children with special
needs, newborn genetic screening program, newborn hearing
screening program, newborn biochemical screening program,
These will eventually be linked in the future.
Third party payers: Medicaid databases
Other specialty facilities: genetic counseling/clinical genetic
facilities

Case Ascertainment
Coding: ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
infant complications, birth defect diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, prenatal care, prenatal diagnostic information,
exposures
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage
Database storage/management: MS Access, Mainframe

Data Analysis
Data analysis software: MS Access
Quality assurance: comparison/verification between multiple
data sources
Data use and analysis: baseline rates, rates by demographic and
other variables, time trends, needs assessment, service delivery,
referral, education/public awareness, prevention projects
Funding
Funding source: MCH funds 100%
Other
Comments: Pennsylvania is in the process of developing a plan
for a demonstration project to identify children within the
                              STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                      S113

                                                     Puerto Rico
                  Puerto Rico Folic Acid Campaign And Birth Defects Surveillance System (PRFAC/BDSS)

Program status: Currently collecting data                            Mother: identification information (name, address, date-of-birth,
Start year: 1995                                                     etc.), demographic information (race/ethnicity, sex, etc.),
Earliest year of available data: 1995                                gravidity/parity, illnesses/conditions, prenatal diagnostic
Organizational location: Department of Health (Maternal and          information, exposures
Child Health), Folic Acid Campaign, Division of Children with        Father: identification information (name, address, date-of-birth,
Special Health Care Needs                                            etc.), demographic information (race/ethnicity, sex)
Population covered annually: 60,000
                                                                     Data Collection Methods and Storage
Statewide: yes
                                                                     Data collection: printed abstract/report filled out by staff,
Current legislation or rule: No Mandatory
                                                                     printed abstract/report submitted by other agencies (hospitals,
Case Definition                                                       etc.)
Outcomes covered: Neural Tube Defects (Anencephaly,                  Database storage/management: MS Access, SPSS
Encephalocele, Myelomeningocele and Meningocele), Cleft Lip          Data Analysis
and/or Cleft Palate, Gastroschisis, Club Foot, Limb reduction        Data analysis software: SPSS, MS Access
defects, Down Syndrome                                               Quality assurance: validity checks, re-abstraction of cases,
Pregnancy outcome: live births (all gestational ages and birth       double-checking of assigned codes, comparison/verification
weights), fetal deaths—stillbirths, spontaneous abortions, etc.      between multiple data sources, clinical review, timeliness
(20 weeks gestation and greater), elective terminations (less than   Data use and analysis: routine statistical monitoring, baseline
20 week gestation, 20 weeks gestation and greater)                   rates, rates by demographic and other variables, time trends,
Age: 1 year old                                                      needs assessment, service delivery, referral, grant proposals,
Residence: In state birth to state residents                         education/public awareness, prevention projects

Surveillance methods                                                 Funding
Case ascertainment: Active case ascertainment and population         Funding source: general state funds 3%, MCH funds 38%,
based                                                                CDC grant 52%, other federal funding (non-CDC grant) 10%,
Case finding/identification sources:                                   CDC Visiting Fellowship Program
Vital records: birth certificates, fetal death certificates
                                                                     Other
Other state based registries: programs for children with special
                                                                     Web site: http://lineainteractiva.etbyte.net/divisiones/servicios-
needs
                                                                     habilitativos/acido_folico/index.html
Delivery hospitals: chart review, obstetrics logs (i.e., labor &
                                                                     Surveillance reports on file: Description of Registry
delivery), regular nursery logs, ICU/NICU logs or charts,
                                                                     Development, Case Report Form, manual for case report form
pediatric logs, postmortem/pathology logs, specialty outpatient
                                                                     Procedure manual available: yes
clinics
Pediatric & tertiary care hospitals: ICU/NICU logs or charts         Contacts
Other specialty facilities: prenatal diagnostic facilities           Elia M. Correa, RN, MPH
(ultrasound, etc.), genetic counseling/clinical genetic facilities   Coordinator , Puerto Rico Folic Acid Campaign/Birth
Other sources: physician reports                                     Defects Surveillance SystemPR Department of Health
                                                                     PO Box 70184
Case Ascertainment                                                   San Juan, PR 00936
Conditions warranting chart review in newborn period: any            Phone: 787-274-5671
chart with a ICD9-CM code 740-759, any chart with a ICD9-            Fax: 787-764-4259
CM codes in addition to 740-759, any chart with selected             E-mail: ecorrea@salud.gov.pr
defects or medical conditions ie abnormal facies, congenital
heart disease, all elective abortions, all prenatal diagnosed or     Diana Valencia, MS, GC
suspected cases                                                      Genetic Counselor, Puerto Rico Folic Acid Campaign/Birth
Conditions warranting a chart review beyond the newborn              Defects Surveillance SystemPR Department of Health
period: any infant with a codable defect                             PO Box 70184
Coding: ICD-9-CM                                                     San Juan, PR 00936
                                                                     Phone: 787-751-3654
Data Collected                                                       Fax: 787-764-4259
Infant/fetus: identification information (name, address, date-of-     E-mail: dvalencia@salud.gov.pr
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
S114        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                        Rhode Island
                             Rhode Island Birth Defects Surveillance Program- Under Development

Program status: Currently collecting data                             Data Analysis
Start year: 2000                                                      Data analysis software: SAS, MS Access
Earliest year of available data: 1999                                 Quality assurance: validity checks, double-checking of assigned
Organizational location: Department of Health (Maternal and           codes, comparison/verification between multiple data sources,
Child Health)                                                         data/hospital audits
Population covered annually: 12,500                                   Data use and analysis: routine statistical monitoring, baseline
Statewide: yes                                                        rates, rates by demographic and other variables, needs
Current legislation or rule: None                                     assessment, service delivery, referral, grant proposals, education/
                                                                      public awareness
Case Definition
Outcomes covered: major birth defects and genetic diseases            Funding
Pregnancy outcome: live births (all gestational ages and birth        Funding source: MCH funds 30%, CDC grant 70%
weights)
                                                                      Contacts
Age: Currently at birth
                                                                      Samara Viner-Brown, MS
Residence: RI residents
                                                                      Chief of Data & Evaluation, Rhode Island Department of
Surveillance methods                                                  Health
Case ascertainment: Currently, passive case ascertainment             3 Capitol Hill, Room 302
Case finding/identification sources:                                    Providence, RI 02908-5097
Vital records: birth certificates, death certificates, matched birth/   Phone: 401-222-5935
death file                                                             Fax: 401-222-1442
Other state based registries: programs for children with special      E-mail: samv@doh.state.ri.us
needs, newborn genetic screening program, newborn hearing             Quaedvlieg Michele, AS
screening program, RI has an integrated database called KIDS          Data Manager, Rhode Island Department of Health
NET, which links data from 9 programs including: Universal            3 Capitol Hill, Room 302
Newborn Developmental Risk Screening; Universal Newborn               Providence, RI 02908-5097
Hearing; Newborn Bloodspot Screening; Early Intervention;             Phone: 401-222-4631
Immunization; Lead Poisoning; WIC; Home Visiting and Vital            Fax: 401-222-1442
Records.                                                              E-mail: MicheleQ@doh.state.ri.us
Delivery hospitals: discharge summaries
                                                                      Rachel Cain, BA
Case Ascertainment                                                    Principal Systems Analyst, Rhode Island Department of Health
Conditions warranting chart review in newborn period: At this         3 Capitol Hill, Room 302
time we have not conducted chart reviews. We will be working          Providence, RI 02908-5097
with our Advisory Committee to identify ICD-9 codes for chart         Phone: 401-222-4610
review.                                                               Fax: 401-222-1442
Coding: ICD-9-CM                                                      E-mail: rachelc@doh.state.ri.us
Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), infant
complications, birth defect diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, pregnancy/
delivery complications, exposures, family history
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
illnesses/conditions, exposures, family history

Data Collection Methods and Storage
Data collection: electronic file/report submitted by other
agencies (hospitals, etc.), Birth and death data were entered into
ACCESS database
Database storage/management: MS Access, Oracle, SAS
                              STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                        S115

                                                        South Carolina
                               South Carolina Birth Defects Surveillance And Prevention Program

Program status: Currently collecting data                              gravidity/parity, illnesses/conditions, prenatal care, prenatal
Start year: 1992                                                       diagnostic information, pregnancy/delivery complications,
Earliest year of available data: 1993                                  exposures, family history
Organizational location: Greenwood Genetic Center                      Father: identification information (name, address, date-of-birth,
Population covered annually: 54,140                                    etc.), demographic information (race/ethnicity, sex, etc.),
Statewide: yes                                                         illnesses/conditions, exposures, family history

Case Definition                                                         Data Collection Methods and Storage
                                                                       Data collection: printed abstract/report filled out by staff
Outcomes covered: Neural Tube Defects
                                                                       Database storage/management: MS Access, SAS
Pregnancy outcome: live births (all gestational ages and birth
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        Data Analysis
(less than 20 week gestation, 20 weeks gestation and greater),         Data analysis software: SAS, MS Access
elective terminations (less than 20 week gestation, 20 weeks           Quality assurance: validity checks, re-abstraction of cases,
gestation and greater)                                                 double-checking of assigned codes, comparison/verification
Age: Up to one year after delivery                                     between multiple data sources, clinical review
Residence: In and out of state births to residents of South            Data use and analysis: routine statistical monitoring, baseline
Carolina                                                               rates, rates by demographic and other variables, time trends,
                                                                       identification of potential cases for other epidemiologic studies,
Surveillance methods                                                   needs assessment, grant proposals, education/public awareness,
Case ascertainment: Combination of active and passive case             prevention projects
ascertainment
Case finding/identification sources:                                     Funding
Vital records: birth certificates, death certificates, matched birth/    Funding source: general state funds 35%, CDC grant 10%,
death file, fetal death certificates, elective termination certificates   other federal funding (non-CDC grant) 35%, March of Dimes
Other state based registries: programs for children with special       20%
needs, Autopsy
                                                                       Other
Delivery hospitals: chart review, disease index or discharge
                                                                       Web site: Http://www.ggc.org
index, discharge summaries, postmortem/pathology logs, ICD-9
Codes                                                                  Contacts
Pediatric & tertiary care hospitals: chart review, discharge           Roger E. Stevenson, MD
summaries, specialty outpatient clinics                                Director: SC BD Surveillance & Prevention Program,
Other specialty facilities: prenatal diagnostic facilities             Greenwood Genetic Center
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/      1 Gregor Mendel Circle
clinical genetic facilities, maternal serum screening facilities       Greenwood, SC 29646
Other sources: physician reports                                       Phone: 864-941-8146
Case Finding/Case Data Collection Outside of the State: Yes,           Fax: 864-388-1707
program has data sharing agreement(s) with other state(s) or           E-mail: res@ggc.org
conduct case finding or data collection in another state.
                                                                       Jane H. Dean, R.N.
Case Ascertainment                                                     Program Coordinator, Greenwood Genetic Center
Conditions warranting chart review in newborn period: any              1 Gregor Mendel Circle
chart with a ICD9-CM code 740-759, any chart with a ICD9-              Greenwood, SC 29646
CM codes in addition to 740-759, any chart with selected               Phone: (864) 941-8138
defects or medical conditions ie abnormal facies, congenital           Fax: (864) 388-1707
heart disease, all prenatal diagnosed or suspected cases               E-mail: jane@ggc.org
Coding: ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
S116       STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                      South Dakota

Program status: No surveillance program

Contacts
Quin Stein
Genetic Counselor, University of South Dakota, School of
Medicine
1400 W. 22nd Street
Sioux Falls, SD 57105
Phone: 605-357-1522
Fax: 605-357-1528
E-mail: qstein@usd.edu
                              STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                       S117

                                                           Tennessee
                                      Tennessee Birth Defects Surveillance Project (TBDSP)

Program status: Currently collecting data                             Quality assurance: validity checks, double-checking of assigned
Start year: 2000                                                      codes, comparison/verification between multiple data sources,
Earliest year of available data: 2000                                 data/hospital audits
Organizational location: Research                                     Data use and analysis: routine statistical monitoring, baseline
Population covered annually: 6000                                     rates, rates by demographic and other variables, monitoring
Statewide: no, We have a hospital-based pilot project that            outbreaks and cluster investigations, time trends, observed vs
covers the Northeast Region. We have statewide Vital Records          expected analyses, epidemiologic studies (using only program
and Hospital Discharge data.                                          data), service delivery, referral, grant proposals, education/public
Current legislation or rule: TCA 68-5-506                             awareness, prevention projects
Legislation year enacted: 2000
                                                                      Funding
Case Definition                                                        Funding source: general state funds 100%
Outcomes covered: Major Birth Defects
Pregnancy outcome: live births (all gestational ages and birth        Other
weights), fetal deaths—stillbirths, spontaneous abortions, etc., a    Surveillance reports on file: Reports from the 1991-1993
fetal death 500 grams or more, or in the absence of weight, of        registry are available. Pilot project reports are not yet available.
22 completed weeks of gestation or more. Induced abortions are        Comments: Tennessee’s Birth Defects Registry lasted from
not included.                                                         1991 to 1993 and covered the entire state. For the year 2000,
Age: Diagnosed up to age 5                                            we have a new hospital-based registry pilot project that covers
Residence: in-state birth to state resident                           one region of the state. The regional pilot project is
                                                                      supplemented by statewide Vital Statistics and Hospital
Surveillance methods                                                  Discharge Data System extracts.
Case ascertainment: hospital based matched to vital records
Case finding/identification sources:                                    Contacts
Vital records: birth certificates, death certificates, matched birth/   David J. Law, Ph.D.
death file, fetal death certificates                                    Director of Research, TN Dept. of Health - BHI
Other state based registries: programs for children with special      425 Fifth Avenue North, 6th Flr.
needs, newborn genetic screening program                              Nashville, TN 37247
Delivery hospitals: disease index or discharge index, discharge       Phone: 615-253-4702
summaries                                                             Fax: 615-253-5187
Pediatric & tertiary care hospitals: disease index or discharge       E-mail: david.law@state.tn.us
index, discharge summaries                                            Derek A. Chapman, Ph.D.
Other sources: Regional Perinatal Centers (hospitals that             Epidemiologist, TN Dept. of Health - BHI
oversee other hospitals)                                              425 Fifth Avenue North, 6th Flr.
Case Ascertainment                                                    Nashville, TN 37247
Coding: ICD-9-CM                                                      Phone: 615-532-7902
Data Collected                                                        Fax: 615-253-5187
Infant/fetus: identification information (name, address, date-of-      E-mail: derek.chapman@state.tn.us
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, illnesses/conditions, prenatal care, prenatal
diagnostic information, pregnancy/delivery complications
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.)
Data Collection Methods and Storage
Data collection: printed abstract/report filled out by staff,
electronic file/report submitted by other agencies (hospitals, etc.)
Database storage/management: MS Access, SAS
Data Analysis
Data analysis software: SAS, MS Access
S118        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                              Texas
                                         Texas Birth Defects Monitoring Division (TBDMD)

Program status: Currently collecting data                              Data Collected
Start year: 1994                                                       Infant/fetus: identification information (name, address, date-of-
Earliest year of available data: 1995                                  birth, etc.), demographic information (race/ethnicity, sex, etc.),
Organizational location: Department of Health (Epidemiology)           birth measurements (weight, gestation, Apgars, etc.), tests and
Population covered annually: 350,000                                   procedures, infant complications, birth defect diagnostic
Statewide: yes, as of 1999 deliveries                                  information
Current legislation or rule: Health and Safety Code, Title 2,          Mother: identification information (name, address, date-of-birth,
Subtitle D, Section 1, Chapter 87.                                     etc.), demographic information (race/ethnicity, sex, etc.),
Legislation year enacted: 1993                                         gravidity/parity, illnesses/conditions, prenatal diagnostic
                                                                       information, pregnancy/delivery complications, exposures,
Case Definition                                                         family history
Outcomes covered: All major structural birth defects and fetal         Father: identification information (name, phone number.),
alcohol syndrome                                                       demographic information (race/ethnicity, sex, etc.)
Pregnancy outcome: live births (all gestational ages and birth
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        Data Collection Methods and Storage
(all gestational ages and birthweights), elective terminations (all    Data collection: printed abstract/report filled out by staff
gestational ages and birthweights)                                     Database storage/management: FoxPro, SQL Server
Age: Up to one year after delivery - FAS up to 6 years
                                                                       Data Analysis
Residence: In-state births to state residents.
                                                                       Data analysis software: Epi-Info, SPSS, SAS, MS Access
                                                                       Quality assurance: validity checks, re-abstraction of cases,
Surveillance methods
Case ascertainment: Active, population-based.                          double-checking of assigned codes, clinical review, timeliness,
Case finding/identification sources:                                     Re-casefinding, re-review of medical records
Vital records:                                                         Data use and analysis: routine statistical monitoring, baseline
Delivery hospitals: chart review, disease index or discharge           rates, rates by demographic and other variables, monitoring
index, discharge summaries, obstetrics logs (i.e., labor &             outbreaks and cluster investigations, epidemiologic studies
delivery), regular nursery logs, ICU/NICU logs or charts,              (using only program data), identification of potential cases for
pediatric logs, postmortem/pathology logs, surgery logs, cardiac       other epidemiologic studies, grant proposals, education/public
catheterization laboratories, specialty outpatient clinics, genetics   awareness, prevention projects
logs, stillbirth logs, radiology logs                                  Funding
Pediatric & tertiary care hospitals: chart review, disease index       Funding source: general state funds 52%, MCH funds 35%,
or discharge index, discharge summaries, ICU/NICU logs or              Preventive Health block grant 13%
charts, pediatric logs, postmortem/pathology logs, surgery logs,
laboratory logs, cardiac catheterization laboratories, specialty       Other
outpatient clinics, genetics logs, radiology logs                      Web site: http://www.tdh.state.tx.us/tbdmd/index.htm
Midwifery facilities:                                                  Surveillance reports on file: Report of Birth Defects Among
Other sources: licensed birthing centers                               1995 Deliveries. 1996 Birth Defects in the Lower Rio Grande
                                                                       Valley. Report of Birth Defects Among 1996 and 1997
Case Ascertainment                                                     Deliveries.
Conditions warranting chart review in newborn period: any              Procedure manual available: yes
chart with a ICD9-CM code 740-759, any chart with a selected           Additional information on file: copy of legislation; brochure on
list of ICD9-CM codes outside 740-759, any chart with selected         the Texas Birth Defects Monitoring Division (English and
procedure codes, any chart with selected defects or medical            Spanish); brochure on Fetal Alcohol Syndrome (English and
conditions ie abnormal facies, congenital heart disease, infant        Spanish); Recent Trends in Neural Tube Defects in Texas;
with low birth weight or low gestation ( 34 weeks GA), all             Leading Causes of Infant Mortality in Texas, 1993 by Ethnicity;
stillborn infants                                                      annual summary reports on birth defect cluster investigations
Conditions warranting a chart review beyond the newborn                conducted; newsletters
period: any chart with a ICD9-CM code 740-759, any chart               Comments: Until 2000, the Texas Department of Health also
with a selected list of ICD9-CM codes outside 740-759, any             had the Texas Neural Tube Defect Surveillance and
chart with selected procedure codes, any chart with selected           Intervention Project along the Texas border with Mexico,
defects or medical conditions ie abnormal facies, congenital           which conducted active surveillance and research on neural
heart disease, infant with low birth weight or low gestation           tube defects. It was working closely with the Texas Birth
( 34 weeks GA), all stillborn infants. Note: TX only collects          Defects Monitoring Division for effective coverage of the
diagnoses made up to the 1st year of age.                              whole state, with concentrated effort in specific geographic
Coding: CDC coding system based on BPA                                 areas.
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S119

Contacts
Mark A. Canfield, Ph.D.
Director, Texas Birth Defects Monitoring Division
1100 West 49th Street
Austin, TX 78756-3180
Phone: 512-458-7232
Fax: 512-458-7330
E-mail: mark.canfield@tdh.state.tx.us
Peter Langlois, Ph.D.
Senior Epidemiologist, Texas Birth Defects Monitoring Division
1100 West 49th Street
Austin, TX 78756-3180
Phone: 512-458-7232
Fax: 512-458-7330
E-mail: peter.langlois@tdh.state.tx.us
S120        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                               Utah
                                                  Utah Birth Defect Network (BDN)

Program status: Currently collecting data                              Data Collected
Start year: 1994                                                       Infant/fetus: identification information (name, address, date-of-
Earliest year of available data: 1994                                  birth, etc.), demographic information (race/ethnicity, sex, etc.),
Organizational location: Department of Health (Maternal and            birth measurements (weight, gestation, Apgars, etc.), tests and
Child Health), University                                              procedures, infant complications, birth defect diagnostic
Population covered annually: 48,000                                    information
Statewide: yes                                                         Mother: identification information (name, address, date-of-birth,
Current legislation or rule: Birth Defect Rule                         etc.), demographic information (race/ethnicity, sex, etc.),
Legislation year enacted: 1999                                         gravidity/parity, illnesses/conditions, prenatal care, prenatal
                                                                       diagnostic information, pregnancy/delivery complications,
Case Definition                                                         exposures, family history
Outcomes covered: 742.000 - 759.000                                    Father: identification information (name, address, date-of-birth,
Pregnancy outcome: live births (all gestational ages and birth         etc.), demographic information (race/ethnicity, sex, etc.), family
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        history
(less than 20 week gestation, 20 weeks gestation and greater),         Data Collection Methods and Storage
elective terminations (less than 20 week gestation, 20 weeks           Data collection: printed abstract/report filled out by staff, All
gestation and greater)                                                 cases reviewed clinically by M. Feldkamp/J. Carey, MD
Age: 2                                                                 Database storage/management: MS Access, Epi-Info
Residence: Maternal residence in Utah at time of delivery
                                                                       Data Analysis
Surveillance methods                                                   Data analysis software: Epi-Info, SPSS, Statview
Case ascertainment: Combined active/passive all of which is            Quality assurance: re-abstraction of cases, double-checking of
population-based                                                       assigned codes, comparison/verification between multiple data
                                                                       sources, clinical review, timeliness, Just starting to reabstract
Case finding/identification sources:
                                                                       cases from each data abstractor’s list
Vital records: birth certificates, death certificates, fetal death
                                                                       Data use and analysis: routine statistical monitoring, baseline
certificates
                                                                       rates, rates by demographic and other variables, time trends,
Delivery hospitals: disease index or discharge index, discharge
                                                                       epidemiologic studies (using only program data), identification
summaries, obstetrics logs (i.e., labor & delivery), regular
                                                                       of potential cases for other epidemiologic studies, needs
nursery logs, ICU/NICU logs or charts, postmortem/pathology
                                                                       assessment, service delivery, referral, grant proposals, education/
logs
                                                                       public awareness, prevention projects, Case-control
Pediatric & tertiary care hospitals: disease index or discharge
                                                                       investigations, genetic studies
index, discharge summaries, ICU/NICU logs or charts,
postmortem/pathology logs, surgery logs, specialty outpatient          Funding
clinics                                                                Funding source: MCH funds 33%, CDC grant 66%
Other specialty facilities: prenatal diagnostic facilities
(ultrasound, etc.), cytogenetic laboratories, genetic counseling/      Other
clinical genetic facilities                                            Web site: health.utah.gov/birthdefect
Other sources: physician reports, lay midwives                         Surveillance reports on file: 1994 NTD Surveillance, 1994-
                                                                       1996 registry report
Case Ascertainment                                                     Procedure manual available: yes
Conditions warranting chart review in newborn period: any              Additional information on file: draft form of Data Sharing
chart with a ICD9-CM code 740-759, any chart with a CDC/               Protocol
BPA code, any chart with selected defects or medical conditions
                                                                       Contacts
ie abnormal facies, congenital heart disease, any birth certificate
                                                                       Marcia Lynn Feldkamp, PA, MSPH
with a birth defect box checked, all stillborn infants, all neonatal
                                                                       Director, Utah Birth Defects Network
deaths, all infants in NICU or special care nursery, all prenatal
                                                                       44 North Medical Dr/POBox 144697
diagnosed or suspected cases, All fetal deaths certificates, NICU
                                                                       Salt Lake City, UT 84114-4697
reports, infant deaths are reviewed
                                                                       Phone: 801-584-8443
Conditions warranting a chart review beyond the newborn
                                                                       Fax: 801-584-8488
period: facial dysmorphism or abnormal facies, GI condition (ie
                                                                       E-mail: mfeldkam@doh.state.ut.us
intestinal blockage), cardiovascular condition, all infant deaths
(excluding prematurity), any infant with a codable defect              Sue Griffiths, BS
Coding: CDC coding system based on BPA, Also use codes for             Coordinator, Utah Birth Defects Network
pregnancy termination (600s)                                           44 N Medical Drive/POBox 144697
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S121

Salt Lake City, UT 84114-4697
Phone: 801-538-9493
Fax: 801-584-8488
E-mail: sgriffit@doh.state.ut.us
S122        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                                 Vermont

Program status: Interested in developing a program

Case Definition
Pregnancy outcome: live births (all gestational ages and birth
weights)

Other
Comments: Vermont is interested in developing a program
appropriate for a rural state with a small number of births. The
legislature is expected to pass a bill that would establish a birth
information council to advise on the need for and
implementation of such a system.

Contacts
Peggy Brozicevic
Research & Statistics Chief
Vermont Department of Health
P.O. Box 70; 108 Cherry Street
Burlington, VT 05402
Phone: 802-863-7298
Fax: 802-865-7701
E-mail: pbrozic@vdh.state.vt.us
                              STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                     S123

                                                          Virginia
                         Virginia Congenital Anomalies Reporting And Education System (VACARES)

Program status: Currently collecting data                             Data Analysis
Start year: 1985                                                      Data analysis software: SAS, MS Access
Earliest year of available data: 1987                                 Quality assurance: validity checks, double-checking of assigned
Organizational location: Pediatric Screenings and Genetic             codes, comparison/verification between multiple data sources,
Services, Div. of Child and Adolescent Health                         data/hospital audits, clinical review, timeliness
Population covered annually: 95,207                                   Data use and analysis: routine statistical monitoring, baseline
Statewide: yes                                                        rates, rates by demographic and other variables, time trends,
Current legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2       epidemiologic studies (using only program data), needs
Legislation year enacted: 1985, ammended 1986, 1988                   assessment, service delivery, referral, grant proposals, education/
                                                                      public awareness, prevention projects
Case Definition
Outcomes covered: Major Birth defects and genetic diseases            Funding
Pregnancy outcome: live births (all gestational ages and birth        Funding source: MCH funds 100%
weights)
                                                                      Other
Age: below 24 months
                                                                      Web site: www.vahealth.org/genetics
Residence: In and out-of-state births to state residents
                                                                      Surveillance reports on file: Annual report
Surveillance methods                                                  Procedure manual available: yes
Case ascertainment: Passive, population based                         Additional information on file: Oracle database
Case finding/identification sources:                                    Comments: Plan for data to be entered directly into database
Vital records: birth certificates, death certificates, matched birth/   from the hospital contacts via Virginia Infant Screening and
death file                                                             Infant Tracking Program (VISITS), a web-based tracking and
Other state based registries: newborn genetic screening               data management system.
program, newborn biochemical screening program
Delivery hospitals: Medical records abstracts codes from charts       Contacts
Pediatric & tertiary care hospitals: Medical Records abstracts        Nancy C Ford, MPH, RN
codes from charts                                                     Director, Pediatric Screenings and Genetic Services, Virginia
                                                                      Department of Health
Case Ascertainment                                                    1500 East Main Street, Rm 137
Conditions warranting chart review in newborn period: any             Richmond, VA 23219
chart with a ICD9-CM code 740-759, any chart with a ICD9-             Phone: 804-371-4100
CM codes in addition to 740-759, any chart with a selected list       Fax: 804-786-3442
of ICD9-CM codes outside 740-759, any chart with selected             E-mail: nford@vdh.state.va.us
defects or medical conditions ie abnormal facies, congenital
heart disease, any birth certificate with a birth defect box           Sharon K. Williams, MS, RN
checked, all neonatal deaths, Chart review is done by the coders      Virginia Genetics Program Manager, Virginia Department of
in Health Information Management                                      Health
Coding: ICD-9-CM, ICD-10 for death certificate                         1500 E. Main Street, Rm 137
                                                                      Richmond, VA 23219
Data Collected                                                        Phone: 804-786-7367
Infant/fetus: identification information (name, address, date-of-      Fax: 804-786-3442
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), birth defect
diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
gravidity/parity, prenatal care, prenatal diagnostic information,
pregnancy/delivery complications, exposures
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
exposures
Data Collection Methods and Storage
Data collection: printed abstract/report filled out by staff,
printed abstract/report submitted by other agencies (hospitals,
etc.), Some hospitals send computer print-outs
Database storage/management: Oracle
S124        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                           Washington
                                              Washington State Birth Defects Registry

Program status: Currently collecting data                           reporting, linking data to vital records for additional
Start year: 1986- Active and 1991- Passive                          demographic and pregnancy risk (exposure) information
Earliest year of available data: 1987                               Database storage/management: D-base
Organizational location: Department of Health (Maternal and
                                                                    Data Analysis
Child Health)
                                                                    Data analysis software: SAS, MS Access
Population covered annually: 80,000
                                                                    Quality assurance: validity checks, re-abstraction of cases,
Statewide: yes
                                                                    comparison/verification between multiple data sources,
Current legislation or rule: Notifiable Conditions: WAC 246-
                                                                    timeliness, We are in the process of developing our validation
101
                                                                    component.
Legislation year enacted: 2000
                                                                    Data use and analysis: routine statistical monitoring, baseline
Case Definition                                                      rates, monitoring outbreaks and cluster investigations, time
Outcomes covered: From 1987 to 1991 (active surveillance),          trends, observed vs expected analyses, service delivery, grant
and since 1991 to the current time (passive surveillance), the      proposals, education/public awareness, prevention projects
Department of Health receive casefinding logs listing ICD-9-CM
                                                                    Funding
codes 740-759; specific primary cancers; specific metabolic
                                                                    Funding source: general state funds 20%, MCH funds 30%,
conditions; FAS/FAE. Over the next year the registry will
                                                                    CDC grant 50%
receive cases of anencephaly, spina bifida, limb reductions, cleft
lip/palate; hypospadias; gastroschisis; omphalocele; and Down       Other
syndrome. We plan to explore ascertainment of Autism,               Surveillance reports on file: Brighter Futures report available
Cerebral Palsy, and FAS/FAE.                                        for 1987-1988 data
Pregnancy outcome: live births (all gestational ages and birth      Procedure manual available: yes
weights), fetal deaths—stillbirths, spontaneous abortions, etc.
                                                                    Contacts
(20 weeks gestation and greater)
                                                                    Asnake Hailu, MD, MPH
Age: to age 4 years historically, We are transitioning to
                                                                    Epidemiologist, Washington Dept. of Health; MCH
ascertainment through 1 year of age currently.
                                                                    P.O. Box 47835
Residence: resident births; child born or diagnosed in state
                                                                    Olympia, WA 98504-7880
Surveillance methods                                                Phone: 360-236-3591
Case ascertainment: Passive case ascertainment                      Fax: 360-236-2323
Case finding/identification sources:                                  E-mail: asnake.hailu@doh.wa.gov
Delivery hospitals: discharge summaries, Casefinding Log
completed by Medical Records staff, sometimes in conjunction
with hospital Information Systems staff
Pediatric & tertiary care hospitals: discharge summaries,
Casefinding Logs completed by Medical Records staff,
sometimes in conjunction with hospital Information Systems
staff
Case Finding/Case Data Collection Outside of the State: Yes,
program has data sharing agreement(s) with other state(s) or
conduct case finding or data collection in another state.

Case Ascertainment
Coding: ICD-9-CM

Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), birth defect diagnostic information
Mother: identification information (name, address, date-of-birth,
etc.)

Data Collection Methods and Storage
Data collection: printed abstract/report submitted by other
agencies (hospitals, etc.), electronic file/report submitted by
other agencies (hospitals, etc.), Reports are used to generate
case lists. We are currently in the process of a web based
                              STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS                                                      S125

                                                          West Virginia
                                          West Virginia Birth Defects Surveillance System

Program status: Currently collecting data                              Data Collection Methods and Storage
Start year: 1989                                                       Data collection: printed abstract/report filled out by staff,
Earliest year of available data: 1989                                  printed abstract/report submitted by other agencies (hospitals,
Organizational location: Department of Health (Epidemiology/           etc.)
Environment), Department of Health (Vital Statistics),                 Database storage/management: Mainframe, Visual D-Base
Department of Health (Maternal and Child Health)
                                                                       Data Analysis
Population covered annually: 21,000
                                                                       Data analysis software: custom
Statewide: yes
                                                                       Quality assurance: validity checks, comparison/verification
Current legislation or rule: State Statute Section 16-5-12a
                                                                       between multiple data sources
Legislation year enacted: 1991
                                                                       Data use and analysis: routine statistical monitoring, rates by
Case Definition                                                         demographic and other variables, epidemiologic studies (using
Outcomes covered: Congenital anomalies of ICD-9 codes 740-             only program data), education/public awareness
759
Pregnancy outcome: live births (all gestational ages and birth         Funding
weights), fetal deaths—stillbirths, spontaneous abortions, etc.        Funding source: MCH funds 100%
(20 weeks gestation and greater), elective terminations (20            Contacts
weeks gestation and greater)                                           Kathryn G. Cummons, M.S.W.
Age: 0-6                                                               Director, Research, Evaluation, OMCFH
Residence: In and out of state births to state residents               350 Capitol St.
Surveillance methods                                                   Charleston, WV 25301
Case ascertainment: passive case ascertainment                         Phone: 304-558-7171
Case finding/identification sources:                                     Fax: 304-558-3510
Vital records: birth certificates, death certificates, matched birth/    E-mail: kathycummons@wvdhhr.org
death file, fetal death certificates, elective termination certificates
                                                                       Melissa A. Baker, M.A.
Other state based registries: programs for children with special
                                                                       Data Analyst, OMCFH
needs, newborn genetic screening program, newborn hearing
                                                                       350 Capitol St.
screening program, newborn biochemical screening program,
                                                                       Charleston, WV 25301
cancer registry, AIDS/HIV registry, SIDS
                                                                       Phone: 204-558-7247
Delivery hospitals: Hospital personnel complete Birth Defect
                                                                       Fax: 304-558-3510
Reporting forms, reports also sent from Genetics Program.
Pediatric & tertiary care hospitals: Hospital personnel complete
Birth Defect Reporting forms, reports also sent from Genetics
Program.
Other specialty facilities: genetic counseling/clinical genetic
facilities
Other sources: physician reports
Case Ascertainment
Conditions warranting chart review in newborn period: any
chart with a ICD9-CM code 740-759
Coding: ICD-9-CM, ICD-10-CM
Data Collected
Infant/fetus: identification information (name, address, date-of-
birth, etc.), demographic information (race/ethnicity, sex, etc.),
birth measurements (weight, gestation, Apgars, etc.), tests and
procedures, infant complications, birth defect diagnostic
information
Mother: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.),
illnesses/conditions, prenatal care, prenatal diagnostic
information, pregnancy/delivery complications, family history
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.), family
history
S126        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                          Wisconsin
                           Wisconsin Birth Defects Prevention And Surveillance Program (WBDPSP)

Program status: Program has not started collecting data               Data use and analysis: baseline rates, rates by demographic and
Start year: 2001                                                      other variables, time trends, capture-recapture analyses,
Earliest year of available data: 2003                                 epidemiologic studies (using only program data), identification
Organizational location: Department of Health and Family              of potential cases for other epidemiologic studies, needs
Services (CSHCN)                                                      assessment, service delivery, referral, grant proposals, education/
Population covered annually: 67,000                                   public awareness, prevention projects, Items checked above are
Statewide: yes                                                        the ones likely to be used.
Current legislation or rule: 1999 Wisconsin Act 114
                                                                      Funding
Legislation year enacted: 2000
                                                                      Funding source: general state funds 35%, MCH funds 23%,
Case Definition                                                        CDC grant 42%
Outcomes covered: structural, genetic, biochemical defects.
                                                                      Other
specific defects TBD.
                                                                      Surveillance reports on file: Birth and Developmental Outcome
Pregnancy outcome: live births (all gestational ages and birth
                                                                      Monitoring Program 1990-91,Birth and Developmental Outcome
weights)
                                                                      Monitoring Program 1990-94
Age: birth to 2 years
                                                                      Comments: The new program will require complete
Residence: TBD, statute mandates reporting of birth defects
                                                                      specification through an Advisory Council and Administrative
diagnosed or treated in WI.
                                                                      Rule.
Surveillance methods
                                                                      Contacts
Case ascertainment: population based, passive
                                                                      Sally Meyer, MPH
Case finding/identification sources:
                                                                      Birth Defects Program Coordinator, Division of Public
Vital records: birth certificates, death certificates, matched birth/
                                                                      Health, Department of Health & Family Services
death file
                                                                      1 West Wilson, PO Box 2659
Other state based registries: newborn hearing screening
                                                                      Madison, WI 53701
program, newborn biochemical screening program
                                                                      Phone: 608-267-9510
Pediatric & tertiary care hospitals: Case reports from pediatric
                                                                      Fax: 608-267-3824
specialty clinics
                                                                      E-mail: meyersa@dhfs.state.wi.us
Third party payers: Medicaid databases
Other specialty facilities: genetic counseling/clinical genetic       Peggy Helm-Quest, MSEd, MHA, CHES
facilities                                                            CSHCN Supervisor, Division of Public Health, Department of
Other sources: physician reports, hospital discharge data             Health & Family Services
through 2 yrs of age                                                  1 West Wilson, PO Box 2659
                                                                      Madison, WI 53701
Case Ascertainment
                                                                      Phone: 608-267-2945
Coding: ICD-9-CM, TBD, considering verbatim diagnosis from
                                                                      Fax: 608-267-3824
case reports
                                                                      E-mail: helmqp@dhfs.state.wi.us
Data Collected
                                                                      Li Cowell, MPH
Infant/fetus: identification information (name, address, date-of-
                                                                      CSHCN Epidemiologist, Division of Public Health, Department
birth, etc.), demographic information (race/ethnicity, sex, etc.),
                                                                      of Health and Family Services
birth measurements (weight, gestation, Apgars, etc.), birth defect
                                                                      Rm 351, 1 W. Wilson St.
diagnostic information
                                                                      Madison, WI 53701-2659
Mother: identification information (name, address, date-of-birth,
                                                                      Phone: (608) 266-3888
etc.), demographic information (race/ethnicity, sex, etc.),
                                                                      Fax: (608) 267-3824
gravidity/parity, family history
                                                                      E-mail: cowelmh@dhfs.state.wi.us
Father: identification information (name, address, date-of-birth,
etc.), demographic information (race/ethnicity, sex, etc.), family
history

Data Collection Methods and Storage
Data collection: TBD
Database storage/management: TBD

Data Analysis
Data analysis software: TBD
Quality assurance: TBD
                            STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS   S127

                                                     Wyoming

Program status: Interested in developing a program

Contacts
Larry Goodmay, M.S., M.B.A
Genetics Program Manager, Department of Health
Hathaway Bldg. , Room 461
Cheyenne, WY 82002
Phone: 307-777-6037
Fax: 307-777-6422
E-mail: lgoodm@state.wy.us
S128        STATE-BASED BIRTH DEFECTS SURVEILLANCE PROGRAMS

                                                 US Department of Defense
                        United States Department Of Defense (DOD) Birth And Infant Health Registry

Program status: Currently collecting data                            Mother: identification information (name, address, date-of-birth,
Start year: 1998                                                     etc.), demographic information (race/ethnicity, sex, etc.),
Earliest year of available data: 1998                                illnesses/conditions, prenatal diagnostic information, pregnancy/
Organizational location: Department of Defense Center for            delivery complications, exposures
Deployment Health Research, Naval Health Research Center,            Father: identification information (name, address, date-of-birth,
San Diego, CA                                                        etc.), demographic information (race/ethnicity, sex, etc.),
Population covered annually: approx 90,000                           illnesses/conditions, exposures
Statewide: No - Nation/World; Department of Defense (DoD)
beneficiaries, including active duty, reserve, and retired military   Data Collection Methods and Storage
personnel, and dependents of the US uniformed services who           Data collection: electronic file/report filled out by staff at
are eligible for health care benefits                                 facility (laptop, web-based, etc.), electronic file/report submitted
Current legislation or rule: Assistant Secretary of Defense,
                                                                     by other agencies (hospitals, etc.), All DoD inpatient and
Health Affairs Policy Memorandum
                                                                     outpatient encounters require e-reporting with diagnostic coding
Legislation year enacted: 1998
                                                                     Database storage/management: SAS
Case Definition
Outcomes covered: CDC-recommended major birth defects                Data Analysis
Pregnancy outcome: live births (all gestational ages and birth       Data analysis software: SAS
weights)                                                             Quality assurance: validity checks, re-abstraction of cases,
Age: Birth to 1 year                                                 double-checking of assigned codes, comparison/verification
Residence: Worldwide; any birth to a US military beneficiary          between multiple data sources, clinical review
Surveillance methods                                                 Data use and analysis: routine statistical monitoring, baseline
Case ascertainment: Electronic diagnostic codes from all             rates, rates by demographic and other variables, observed vs
inpatient and outpatient healthcare encounters of US military        expected analyses, epidemiologic studies (using only program
beneficiaries                                                         data), identification of potential cases for other epidemiologic
Case finding/identification sources:                                   studies, grant proposals, prevention projects
Vital records:
Delivery hospitals: disease index or discharge index, discharge      Funding
summaries, specialty outpatient clinics, All inpatient and           Funding source: other federal funding (non-CDC grant) 100%
outpatient encounters are captured in standardized DoD data
Pediatric & tertiary care hospitals: disease index or discharge      Other
index, discharge summaries, specialty outpatient clinics, All        Web site:
inpatient and outpatient encounters are captured in standardized
                                                                     http://www.nhrc.navy.mil/rsch/code25/projects/birthdefects.htm
DoD data
                                                                     Surveillance reports on file: DoD/HA policy memorandum;
Third party payers: All inpatient and outpatient encounters are
                                                                     Technical Reports
captured in standardized DoD data
Other sources: Validation of standardized electronic data is         Contacts
performed by active case ascertainment and chart review of all
                                                                     Margaret Ryan, MD, MPH
births at one of the largest DoD hospitals (Naval Medical
                                                                     Director, DoD Birth and Infant Health Registry, DoD Center
Center, San Diego)
                                                                     for Deployment Health Research, Code 25, Naval Health
Case Ascertainment                                                   Research Center
Conditions warranting chart review in newborn period: any            P.O. Box 85122
chart with a ICD9-CM code 740-759, Validation of standardized        San Diego, CA 92186-5122
electronic data is performed by active case ascertainment and        Phone: 619-553-7027
chart review of all births at one of the largest DoD hospitals       Fax: 619-553-7601
(Naval Medical Center, San Diego)
                                                                     E-mail: ryan@nhrc.navy.mil
Conditions warranting a chart review beyond the newborn
period: any infant with a codable defect                             Rosha Aran, BS
Coding: ICD-9-CM                                                     Administrator, DoD Birth and Infant Health Registry
Data Collected                                                       NHRC, PO Box 85122
Infant/fetus: identification information (name, address, date-of-     San Diego, CA 92186-5122
birth, etc.), demographic information (race/ethnicity, sex, etc.),   Phone: 619-553-7027
tests and procedures, infant complications, birth defect             Fax: 619-553-7601
diagnostic information                                               E-mail: aran@nhrc.navy.mil

								
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