WA Register of Developmental Anomalies (WARDA)
WARDA welcomes the opportunity for collaborative research.
The Executive Director, Public Health has authority to disclose information on the register for the purposes of research approved in accordance with guidelines for the conduct of medical research involving humans issued in compliance with the National Health and Medical Research Council Act 1992 (Commonwealth) section 10.
Access to identified or identifiable records by persons other than those employed by the Register will be given only with the express permission of the Executive Director, Public Health on the advice of the Department of Health’s Human Research Ethics Committee.
The Executive Director, Public Health may authorise disclosure of non-identifying information for a purpose mentioned in regulation 8(4) of the Health (Western Australian Register of Developmental Anomalies) Regulations 2010.
How to access the data
If you are interested in carrying out research using the WARDA data, please complete the following steps:
- Contact the Head of WARDA to discuss your proposal.
- Approval
- 2.1 If your proposal is approved by WARDA and you only require non-identifying, tabulated or statistical information, WARDA will extract the information and provide it to you.
- 2.2 If your proposal is approved by WARDA but requires ethics approval(s), follow the steps outlined on the Department of Health Human Research Ethics Committee and other Human Research Ethics Committees as necessary.
The head of WARDA requires a plain language summary of your proposal for approval by the WARDA Consumer Reference Group
Forward copies of the Ethics Approval notifications to WARDA (Department of Health Human Research Ethics Committee will automatically do this).
- Once received, the information will be extracted and provided to you.
- Final reports or papers for publication are to be vetted by the head of WARDA before publication.
Note: WARDA codes all diagnoses with the British Paediatric Association Classification of Diseases (five-digit extension of ICD9).
Monitoring trends in WA
The information collated by WARDA enables the Register to monitor and track the occurrence of developmental anomalies in WA.
Monitoring trends in Australia and around the world
Non-identified information is provided to the Australian Institute of Health and Welfare (external site) to assist in monitoring developmental anomaly trends throughout Australia.
Cerebral palsy data is sent to the Australian Cerebral Palsy Register (external site).
WARDA also contributes to the monitoring of developmental anomalies worldwide by providing tabulated data to the International Clearinghouse for Birth Defects Surveillance and Research (external site).
Research
Information collected by WARDA is used in a range of research settings. More than 200 research papers have been written using this valuable resource, making WARDA a world leader in cerebral palsy and developmental anomaly research.
Highlights of the research include:
- Research into the role of the vitamin folate for the prevention of neural tube defects. The data has also been used to monitor trends and has shown a fall in neural tube defects in relation to the increase in use of periconceptional folic acid supplements and voluntary fortification of some foods with folic acid. The data collected by WARDA will be critically important in monitoring the effects of mandatory fortification of flour for bread-making, which was introduced in Australia in 2009.
- Evaluation of first trimester screening in WA for Down syndrome. This has shown that the first trimester screening program is very effective at identifying pregnancies at high risk of Down syndrome.
- Research identifying the under-ascertainment of Fetal Alcohol Syndrome in WA and the high rates of Fetal Alcohol Syndrome in some locations, which has led to the development of a Model of Care for Fetal Alcohol Spectrum Disorder in WA.
- Research into the causes of cerebral palsy which has shown that, contrary to the widely held belief, lack of oxygen to the baby’s brain during a difficult birth is in fact a minor cause of cerebral palsy. Consequently, research is now focused on other risk factors, especially those occurring during and before pregnancy that either cause the brain damage or make the brain vulnerable to damage during labour and delivery.
- The ability to monitor increases in severe cerebral palsy to plan for adequate service provision, as the availability of many new medical technologies are extending the life span of persons in this high dependency group.
Diagnostic codes for birth defect
The British Paediatric Association extension of the International Classification of Diseases Version 9 is used (BPA-ICD9). The WARDA includes up to 10 diagnoses per case and records the following for each anomaly:
BPA-ICD9 code
The WARDA staff have modified and expanded on some of these codes to suit the purposes of the WARDA. These codes are all listed in the Numerical order (PDF) document.
Description code
Each anomaly is described in a text field. The default text is listed in the Alphabetical order (PDF) document. However, the default text may be modified or expanded for an individual case to provide further description. For example, 75980 SYNDROME OF FACE N.E.C (NEC = not elsewhere classified) would have the actual syndrome diagnoses recorded (e.g. Stickler syndrome). Also, for some anomalies, whether the anomaly affects the left or right or is bilateral is added to the text for anomalies that otherwise have the same diagnostic code.
Major code
Each anomaly is coded as being major (Y) or minor (N), based on an original coding schema used by the Centres for Disease Control in the USA, reflecting the severity of the anomaly. The default code is listed in both alphabetical and numerical coding documents. However, the default code may be changed if the individual anomaly in a particular case does not reflect the default.