Alaska Birth Defects Registry

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					Alaska Birth
Defects Registry
 Gail Stolz, Manager
 269-8068
 Gail_Stolz@health.state.ak.us




              MCH Epidemiology Unit
Presentation outline
                 Why should we monitor
                  birth defects?
                 How do we monitor
                  them?
                 What do we know now?
                 What might the future
                  hold for the Alaska Birth
                  Defects Registry
                  (ABDR)?
                             MCH Epidemiology Unit
Why monitor birth defects?
   Birth defects are a leading cause of infant
    mortality and morbidity in Alaska.
   Information on birth defects prevalence is needed
    for evaluating prevention efforts and addressing
    the health care and other needs of children with
    birth defects.
   Some birth defects are sentinel conditions and
    offer clues about the impact of exposure to
    environmental contaminants
                                     MCH Epidemiology Unit
ABDR foundation
   The ABDR started in
    1996, with adoption of
    7 AAC 27.012
   Our goal: To be a
    reliable, valid, and
    timely information
    source for ascertaining
    the number of infants
    and young children with
    birth defects in Alaska.

                               MCH Epidemiology Unit
 Reportable anomalies
Our regulation uses ICD-9 codes to specify which
birth defects we follow. They are in three general
groups:
    Major anomalies, such as hearts with incomplete or
     missing walls, arteries or valves, oral clefts, and neural
     tube defects
    Other anomalies of interest in Alaska, such as congenital
     hypothyroidism, certain anemias and muscular dystrophies
    A diagnostic group called “Fetus or newborn affected by
     maternal conditions which may be unrelated to the present
     pregnancy”

                                            MCH Epidemiology Unit
When to report
                If a child is diagnosed with
                 any reportable anomaly
                 during his or her first year of
                 life, it should be reported to
                 the ABDR.
                A diagnosis in the maternal
                 conditions unrelated to
                 pregnancy group should be
                 reported until the child is six
                 years of age.
                              MCH Epidemiology Unit
ABDR basics
   We use a passive surveillance methodology.
   We receive reports from hospitals and health care
    providers – ABDR’s sensitivity is very high
    because we also have Medicaid claims, RPMS
    extracts and the Maternal Infant Mortality Review
    as secondary data sources.
   Reporting instructions are included in Conditions
    Reportable to Public Health and on our website.

                                     MCH Epidemiology Unit
    What do we know?
   There are nearly 10,000 (human)
    births every year in Alaska
   Between 2001 and 2003, an
    annual average of about 2,500
    children were reported to ABDR
    for the first time.
   About 17% of children with
    Alaskan birth certificates and
    born between 1996 – 2002 have
    been reported to the ABDR;
    31% of them had a major
    anomaly.

                                      MCH Epidemiology Unit
Most often reported major anomalies
Prevalence by birth year per 10,000 live births                96 – 98   00 – 02
760.71                                                          150.3    103.3
Atrial septal defect                                             70.1    103.3
Ventricular septal defect                                        80.8     86.2
Patent ductus arteriosus                                         50.4     71.5
Hypospadias and Epispadias                                       35.4     34.4
Pyloric stenosis                                                 30.7     27.4
Obstructive genitourinary defect                                 32.1     30.1
Congenital hip dislocation                                       36.7     22.7
Microcephalus                                                    35.1     24.4
Oral clefts                                                      28.7     26.7
Data source: Alaska Birth Defects Registry, preliminary data

                                                               MCH Epidemiology Unit
Average Number of Children Reported
Annually by Region: Birth Years 1996 – 2001

        Southwest

         Southeast

          Northern

            Interior

        Gulf Coast

   Anch & Mat-Su


                       0   500     1000    1500     2000    2500   3000   3500   4000
                                               Rate per 10,000

                                 Major anomalies        Other anomalies
 Data source: Alaska Birth Defects Registry, preliminary data

                                                                 MCH Epidemiology Unit
Neural Tube Defect Trends, Three-Year
Moving Average, Alaska 1996 - 2002

                    12
                    10
                         9.0
                     8
  Rate per 10,000




                     6
                                                                             5.3

                     4

                     2
                     0
                         96 - 98   97 - 99   98 - 00           99 - 01   00 - 02
Data source: Alaska Birth Defects Registry, preliminary data

                                                                 MCH Epidemiology Unit
Oral cleft Trends, Three-Year Moving
Average, 1996 - 2002

                    34

                    32
  Rate per 10,000




                    30
                         28.7
                    28
                                                                             26.7
                    26

                    24
                          96 - 98   97 - 99   98 - 00          99 - 01   00 - 02
Data source: Alaska Birth Defects Registry, preliminary data

                                                                 MCH Epidemiology Unit
Hirschsprung’s Disease Trends, Three-Year
Moving Average, Alaska, 1996 - 2002

                    20

                         15.4
                    15
  Rate per 10,000




                                                                              12.0
                    10

                     5

                     0
                         96 - 98   97 - 99    98 - 00          99 - 01   00 - 02

Data source: Alaska Birth Defects Registry, preliminary data

                                                                 MCH Epidemiology Unit
                            The National Birth Defects
                            Prevention Network




• There are registries in 46 states, the District of Columbia, Puerto Rico
  and the US Department of Defense
                                                    MCH Epidemiology Unit
 Should we compare?
There are two significant considerations when looking
at reported prevalence across registries --
    Each registry uses a unique methodology for collecting
     data – some are active and some are passive, some limit
     their focus to births and others receive reports up to the
     child’s 18th birthday, and registries collect information
     about overlapping but varying groups of diagnoses.
    Many of our data sources report from their billing process
     – we know that some reports do not represent a confirmed
     diagnosis.


                                            MCH Epidemiology Unit
If we compare

             Anomaly                          AK                CO    Atlanta
 Atrial septal defect                        86.1           50.4       25.3
 Hirschsprung’s disease                      12.8               2.5     2.3
 Neural tube defects                          8.8               5.5     8.3
 Oral clefts                                 29.1           19.9       15.5
 Data source: Birth Defects Research: Part A, September, 2004




                                                           MCH Epidemiology Unit
Case verification pilot
                                    Total         %
             Anomaly               Reported   confirmed
Hirschsprung’s disease                13        92%
Neural tube defects                    7        86%
Pulmonary valve stenosis/atresia      44        27%
Pyloric stenosis                       5        94%
Sickle cell anemia/trait              21        14%
All reports reviewed                 150        63%


                                      MCH Epidemiology Unit
What the future holds
   More chart reviews
   Folic acid knowledge, attitude and behaviors
    survey
   2005 Data Book
   If the CDC grant is successful:
       Explore the feasibility and practicality of referrals
       Developing/enhancing partnerships with providers and
        advocacy groups
       Publishing reports


                                           MCH Epidemiology Unit
Regulatory change?
   Simplify reporting by
    increasing the age for all
    reportable diagnoses to
    six
   Add more
    conditions/anomalies…
      Metabolic disorders

        to reflect mass
        spectrometry
      Autism?

      Others?




                                 MCH Epidemiology Unit
MCH Epidemiology Unit