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WARDA Birth Defects Data

2

Version 3.0

Last updated Oct 2016 Module 3 Variable lists

Every request for data from the WA Register of Developmental Anomalies will be evaluated separately on its merits by the WARDA Data Custodian.

Before approval to obtain WARDA data will be given:

·  Researchers must discuss their project and their data needs with the WARDA Data Custodian; and

·  Researchers must also provide a separate lay summary (~200 words) of their project to the Data Custodian for consideration by the WARDA Consumer Reference Group.

The WARDA Data Custodian is:

Dr Gareth Baynam, email

*Two of the variables below relate to tables in the Report of the Birth Defects Registry of Western Australia 1980-2007. This document and other information may be found at: http://kemh.health.wa.gov.au/services/register_developmental_anomalies/

Information on British Paediatric Association Coding used for WARDA can be found at http://kemh.health.wa.gov.au/services/register_developmental_anomalies/diagnostic_codes_birth_defects.htm

Please note that all requests for WARDA data require DOHWA HREC approval.

2

Version 3.0

Last updated Oct 2016 Module 3 Variable lists

Request the variables you require below by clicking on the box on the left.

Request / Variable / Description
Child’s details
Subset date of birth / MMYYYY
Subset date of birth / YYYY
Sex
Weight
Race
Plurality
Birth Outcome / Livebirth, stillbirth, termination of pregnancy
Age at death / Days at death
Multicode / Whether birth defect is isolated or multiple
Gestational age
Mother’s details
Subset date of birth / MMYYYY
Subset date of birth / YYYY
Father’s details
Subset date of birth / MMYYYY
Subset date of birth / YYYY
Diagnosis Codes (1-10)
Diagnosis code / ICD-9 coding. Britsh Paediatric Association.
ARDiagnosis Code / ICD diagnosis coded to BDR Categories (Table 4*).
Diagnosis Description / May contain minor variations within Diagnosis code
Is Major / Major or minor congenital malformation
Notification codes (1-10)
ARNotification Code / Coded source of notification. Coded to Annual Report (Table 6*) categories.

Sensitive Variables

All of the variables below have been determined as sensitive by the Data Custodian and therefore require written justification. Please provide this in the space in the table below. All items require DOHWA HREC approval.

Request / Variable / Description
Baby’s Full date of birth / DDMMYYYY
Enter justification here
Mother’s Full date of birth / DDMMYYYY
Enter justification here
Father’s Full date of birth / DDMMYYYY
Enter justification here
Birth hospital
Enter justification here
Postcode / Postcode of mother at time of birth/first notification
Enter justification here

Comments:

Enter any extra comments here

2

Version 3.0

Last updated Oct 2016 Module 3 Variable lists