NLSTACRIN Search of the National Death Index (NDI) Database

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NLSTACRIN Search of the National Death Index (NDI) Database Powered By Docstoc
					              ACRIN / NLST
    Search of the National Death Index
              (NDI) Database


   Interpreting Results of NDI Search and Requesting
                   Death Certificates




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TABLE OF CONTENTS




INTERPRETING RESULTS OF NDI SEARCH AND REQUESTING DEATH CERTIFICATES ... 3
  RESULTS ..................................................................................................................................................... 3
  ASSESSING MATCHES ................................................................................................................................. 4
  NDI RESULTS FORM – APPENDIX B ............................................................................................................ 7
  REQUESTING DEATH CERTIFICATES ............................................................................................................ 7
  NDI PLUS ................................................................................................................................................... 9
  INITIAL STEPS TO BEGIN REVIEW ..............................................................................................................10




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Interpreting Results of NDI Search and Requesting Death Certificates
This document outlines the procedures for applying the criteria for determining NDI matches, completing
the NDI results form, and requesting death certificates using the forms generated by NDI.

Results
Each center will receive results back on CD-ROMs* containing the following:

    1) K file folder: 11 files containing output for participants that are known
       decedents
    2) X file folder: 11 files containing output for participants with unknown vital status
       (lost to follow-up)
    3) ICD codes folder: containing information regarding cause of death codes. Be sure to
       start with the document “Read Me First”. Assessing the match information from the output
       (found in the K and X folders) should occur before reviewing this information.

    *The files are zipped because of the large amount of information contained on the CD. Be sure that
    the computer which is used for opening the files has the program, WinZip, installed.

The following files will be found both in the K and X file folder. The files may need to be viewed through
“WordPad” or “NotePad”. The files which will be of most use for the task of evaluating the match results
and for requesting death certificates are bolded.

    1) Summary file: this file contains the overall number of matches, multiple matches and matches
       according to state of death
    2) Cause file: disregard file
    3) Combined file: this file is intended for those who receive large numbers of possible NDI matches
       and is provided for those who would like to write computer programs to assist in assessing the
       quality of the matches.
    4) Compressed file: contains the same info as the Retrieval Report but is compressed for ease of
       viewing for those sites where a large number of records were submitted to determine matches
    5) Edits file: used to show the frequency and percent completeness of each data item that was
       submitted to the NDI. The edits results file shows the extent to which submitted data were out of
       range or missing. Checking the edit results will help reveal if the data provided for a search were
       formatted and coded correctly and whether certain data items were inadvertently omitted.
    6) Matching File – generated for your information, contains the record information that was
       submitted to the NDI. The file contains those records involved in possible matches with one or
       more NDI records.
    7) Non-Matching File – generated for your information, contains those records which were not
       involved in matches with any NDI records. This file can be used for future NDI searches.
    8) PRT cause file – used for determining the cause of death for the highest ranked match (or those
       matches with a high enough probabilistic score) for each record submitted to the NDI.
    9) Rejected File – generated for your information, contains records which failed to satisfy the basic
       criteria needed to run the search and were rejected prior to the search. A record would be rejected
       if it did not contain at least a first and last name and either a SSN or a month and year of birth. If
       the missing information on some or all of the records can be obtained and added to the file, the
       records could be resubmitted to the NDI for a future search.




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             10) Report file: this contains the Retrieval Report (see Appendix A for example) which provides the
                 records provided to NDI and all the possible matches found for each record.
             11) Req Form: this file contains all the possible NDI record matches grouped by the States in which
                 deaths occurred. These “Death Certificate Request Forms” will be used when submitting requests
                 for death certificates from each state‟s vital statistics department. Note: A record that was
                 provided to the NDI may produce multiple matches which could appear on more than one state‟s
                 death certificate request form.

         In addition, there will be printouts, which provide a preview of the results files


         Assessing Matches
         Possible matches have already been determined by the NDI (and will appear on the Retrieval Report
         – see below for a sample Report and Appendix A for the complete sample including legend). It is up
         to each site to review the output generated from the search, assess the quality of each possible NDI
         record match listed, and determine which possible matches are true matches or not.

         The control number refers to the unique NDI identification number which corresponds with the identifying
         information (provided to the NDI with the original submission) for an individual participant in the study.
         If a number was not given with each record, a number will be assigned by the NDI.




User
record
                                                                     For “known deaths”, this will be the date of
                                                                     death, for “unknown / lost to follow-up”, this
                                                                     will be the last known alive date.



         The NDI matching algorithm uses twelve combinations of data items to determine whether a user record
         matches with an NDI record, and multiple NDI records may be returned for a given user record, thus many
         will be false matches. The potential matches are ranked on the Retrieval Report based upon the number of
         matching data items. Those NDI record matches containing a greater number of matching data items
         are ranked first on the Retrieval Report.




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To qualify as a possible record match, both the user record and the NDI record must satisfy at least one of
the 12 conditions or matching criteria listed below. As stated previously, the matches have already been
determined and are on the Retrieval Report. These 12 conditions are listed for your information to give an
idea of which data items are being compared with the NDI files and what exactly signifies a possible
match.

         1)    SSN, first name
         2)    SSN, last name
         3)    SSN, father‟s surname
         4)    If the subject is female: SSN, last name (user record) and father‟s surname (NDI
               record)
         5)    Month and exact year of birth, first and last name
         6)    Month and exact year of birth, first name, father‟s surname
         7)    If the subject is female: month and exact year of birth, first name, last name (user
               record) and father‟s surname (NDI record)
         8)    Month and exact year of birth, first and middle initials, last name
         9)    Month and + 1 year of birth, first and middle initials, last name
         10)   Month and + 1 year of birth, first and last name
         11)   Month and day of birth, first and last name
         12)   Month and day of birth, first and middle initials, last name


The following are criteria developed for Exact Matches and guidelines for evaluating Probable
Matches for NLST records:

1) Exact Match: if the following data items from the user record match exactly with the NDI record, it
   may be considered an Exact Match:

                   • First and Last Names, and Middle Initial
                   • Social Security Number
                   • Date of birth
                   • Sex code

Whenever all the data items provided on the user record (the Participant information submitted to
the NDI) match exactly with the related items on the NDI record, the NDI record match will be listed
with an asterisk in the left margin.

The example below indicates that the first line under Possible NDI Records Matches is an exact match as
indicated by the asterisk next to the state of “Pennsylvania”.




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Note: It is important to note that exact matches do not necessarily mean the record is a “true
match”. Matches are “exact” when all of data items from a user record matches the data items for a
given record in the NDI database.


2) Probable Match: a record is a Probable Match when some of the fields do not match exactly, but
   there is indication that they are close. Sex codes must always match. However, if other data items do
   not match exactly, they must meet at least the following criteria:

                 Under “Name” in the Retrieval Report, if F (for first name) has an NDI code of “I,” this
                  indicates that the first initial of the first name matches.
                 Under “Name” in the Retrieval Report, if L (for last name) has an NDI code of “N,” this
                  indicates that the name matched only NYSIIS (New York State Identification and
                  Intelligence System) phonetic codes.
                 At least the last four digits of the Social Security Number match. If the Social Security
                  Number is not provided, then the Date of Birth should match exactly, month, day, and
                  year.
                 Month of birth, within one month before or after the participant‟s date of birth.
                 Year of birth, within ten years before or after the participant‟s date of birth.
Probable match criteria were developed by the LSS trial team to assist in identifying probable
matches. You may or may not request a death certificate for all probable matches. This will depend
on the number of matches returned per record and whether you feel that a probable match or
matches could possibly be a true match.
The submission file will also include state of residence to help determine the suitability of a match. If a
record does not meet the criteria for an Exact Match or Probable Match, then they fall into one of the two
following categories:

3) No Match: The participant record was not an Exact or Probable Match with NDI records. If the
   participant continues to be lost to contact, the indentifying information may be sent as part of a
   submission file in future searches.

4) Rejected: No information was returned from NDI for this participant because they failed to satisfy the
   basic criteria of the NDI edit program and were rejected prior to the search.




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After reviewing the output from the NDI a quality check should be performed by
someone other than the initial reviewer.

NDI Results form – Appendix B
An NDI Results form will be completed for all participants who met the „NDI Search Request Criteria‟ as
stated below.

NDI Search Request Criteria: The NDI will be used for known decedents on whom you were unable to
obtain/locate a death certificate (after all local search possibilities were exhausted) or participants lost to
follow-up (for 18 consecutive months).

The NDI Results form requires the following information to be completed by each study site for each
participant:

        The type of match (Exact, Probable, No Match or Rejected) that resulted from the search
        Whether a death certificate will be requested
        The underlying cause of death (ICD-10 code) – if available
        The year in which the participant died and the state of death – if available
        The signature of the person who performed the initial review of the NDI output and the initials of
         the person who performed the quality check

Enter into CTMS and retain the NDI Results Form in the participant‟s source documentation.




Requesting death certificates
With the return of the results of the NDI search, the Research Associate will also receive a document
entitled Obtaining State Death Certificates. This document contains the most recent available information
on each state‟s requirements and charges for the release of copies of death certificates. The document also
includes the name, address, and phone number of a contact person in each state‟s vital statistics office, as
well as the specific death certificate release policy and charge.

It may be that several Probable Matches identify a participant well, and it is appropriate to request more
than one death certificate, ultimately retaining the one that matches with information the Research
Associate has in the participant‟s folder, and shredding the other(s).

When requesting copies of death certificates from a vital statistics office, the Research Associates are
encouraged to use NDI‟s Death Certificate Request Form, which comes with the NDI search reports. The
Request Form lists the NDI record matches for each state sorted first by year of death and then by death
certificate number. Selected information from each matching record is also presented. This information
assists the vital statistics office in releasing the correct death certificate.

Steps in requesting death certificates identified through NDI are as follows:
   Always complete the first page of a state‟s Death Certificate Request Form (see image on next page).
    Eliminate all other pages that do not contain requests for death certificates (as many matches may
    appear for one state however and there may not be a need to obtain death certificates for all)
   Place a check mark in the left margin of the Death Certificate Request Form for those death certificates
    that are being requested.




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           Review the manual “Obtaining Death Certificates” to see what is needed (per state) to determine their
            fees, how to make payment, and what additional information is needed in order to allow the office to
            release copies of the death certificates. It is recommended that each state‟s vital statistics office (where
            a death certificate will be requested) also be contacted to verify that all information detailed in
            “Obtaining Death Certificates” document is still applicable and to determine if additional information
            is needed.
           Note: The NDI no longer forwards a copy of each application to the states‟ vital statistics offices, so
            the NDI is requesting that the Research Associate also furnish a copy of the NDI application and
            approval letter to the vital statistics office so that the state will be informed of the NLST death
            certificate retention and destruction plan and intent to do followback. The application must include a
            copy of a current IRB approval letter.
           Mail the forms, the copy of the NDI application and the approval letter, along with payment to the
            appropriate state agency.
           Upon receipt of the death certificate, the Research staff should verify that the information on the death
            certificate matches with information in the participant‟s file.

 First page of
 request form (for
 the sate of CA)




Place check mark here for the
records that you would like to
request death certificates for

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NDI Plus

       The NDI is authorized to release the coded causes of death for those matching NDI records which are ranked first
       in the list of possible matches. The only exception permitted is that coded causes can also be released in those few
       instances when a matching NDI record is assigned a high enough probabilistic score (status code) to be considered
       a true match (regardless of how the record is ranked). The probabilistic score will either be a “0” (for false match)
       or a “1” (true match). Most NDI record matches which are good enough to be assigned a probabilistic score of
       1 will also tend to be ranked first in the list of possible matches (on the Retrieval Report).

       The PRT cause file will be used to find out the underlying cause of death.

       The purpose of providing the Cause of Death results for the highest ranked match is to obtain the cause of death
       which is detailed on the death certificate so that it can be available to sites without having to obtain a death
       certificate. In the case of the NLST study, death certificates should be obtained anyway so the NDI Plus results just
       provide some additional information for those who are interested in viewing the cause of death.

       Below is an example of what can be found on the PRT cause file. The underlying cause code listed below is an
       ICD9 code. You will be provided with ICD10 codes which will have a letter followed by 3 numbers (i.e. C439).
       The underlying cause code is the code which will be recorded on the NDI Results Form for the “Cause of Death”.




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Initial Steps to Begin Review


If you cannot open the files on the CD-ROM which were sent from the NDI, contact your IT
department to request to have WinZip installed on your computer.



     Open the “K” file found on the CD-ROM from the NDI (these are the known decedents) – Review these
      cases first as they are high priority

     Refer to the “Retrieval Report” (found in the Report File on the CD ROM) – First ensure that the
      information provided to the NDI (the user record) is indeed the correct information for each
      participant. Then review the NDI possible matches on the Retrieval Report to determine whether the
      matches are likely to be “true matches”. You will most likely be requesting a death certificate from those
      records that produced an exact match or a higher ranking match especially if entire Social Security
      Numbers were provided to the NDI for the search

     After determining which matches you will be requesting death certificates for, go to the “Req Form” file
      and locate the appropriate Death Certificate Request Form (according to the state of death for the
      match) and check the record for which you would like a death certificate. Refer to the “Obtaining
      Death Certificates” instructions to review what each state requires for submission (appropriate
      paperwork, fees) in order to obtain a death certificate.

     Review the “Read Me First” file in the ICD-10 code file folder found on the CD-ROM to learn about
      viewing causes of death.

     Review the PRT cause file to determine the ICD 10 code (Underlying Cause Code) found for the records
      that you are requesting death certificates for. Keep in mind that if there is more than one NDI match (per
      user record) that you are requesting death certificates for, there will only be one cause of death code
      provided (the highest ranking NDI record). Complete the appropriate field (ICD 10 code) on the
      „ACRIN NDI Results Form‟.

     Continue the above steps for the “X” file found on the CD-ROM from the NDI (these are the unknown
      vital status or lost to follow-up cases).

Tips

Use the Edits file report to see if submitted data were out of range or missing. Checking the edit results will help reveal if
the data provided for a search were formatted and coded correctly and whether certain data items were inadvertently omitted.

The date found under “User Data” on the Retrieval Report is the date that was provided to the NDI which is either the date of
known death OR the date of last contact with the participant. If the NDI produced a record with a date of death PRIOR to the
User Data Date for those lost participants than these records can be disregarded automatically as it is known that the
participant was alive at that time.




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Appendix A




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Appendix B




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