The Australian Government Department of the Australian Institute of Health and Welfare

Data Collection Overview

Western Australian Register of Developmental Anomalies (WA RCA)

Data Collection Sources

Notifications from hospitals and medical practitioners to WARDA are statutory under the Health (Western Australian Register of Developmental Anomalies) Regulations 2010.

Institutional environments

The WA Birth Defects Registry was established as a voluntary data collection in 1980 and the WA Cerebral Palsy Register was established as a voluntary data collection in 1977. The Western Australian Register of Developmental Anomalies (sometimes referred to as WARDA or the Register) brings together these two registers, under one banner to record and monitor developmental anomalies in WA. On 7 January, 2011, the Health (Western Australian Register of Developmental Anomalies) Regulations 2010 were gazetted in the Western Australian State Parliament. As a result notification of developmental anomalies is required by law.

Relevance and Scope

A developmental anomaly is a broad term used to define conditions which are present at conception or occur before the end of pregnancy. In the case of cerebral palsy, a small number also occur after birth. An anomaly is considered as a departure from normal development. Developmental anomalies are also sometimes called birth defects, congenital malformations or congenital anomalies.
For the Register, a developmental anomaly is defined as:
a. cerebral palsy; or
b. a structural or functional anomaly, which is present at conception or occurs before the end of pregnancy and is diagnosed during pregnancy, or after stillbirth or termination of pregnancy, or after live birth, but before 6 years of age.
Structural means how the body is built and functional means how the body works. Structural developmental anomalies include conditions such as spina bifida, congenital dislocation of the hip and congenital heart defects. Functional anomalies include conditions such as cystic fibrosis and haemophilia. Fetal alcohol syndrome and Down syndrome are also developmental anomalies. A list of conditions (98.29KB PDF) is included in the Register.
WARDA maintains an accurate database of developmental anomalies which occur in WA, and has done so for several decades as the WA Birth Defects Register and the WA Cerebral Palsy Register. The information held by WARDA is used to:
• Monitor the number of cases of developmental anomaly in WA;
• Plan, monitor and evaluate services for the prevention and alleviation of developmental anomalies and the care of persons with a developmental anomaly in WA;
• Compile and publish general or statistical information relating to developmental anomalies; and
• Carry out research into the causes of developmental anomalies and the effectiveness of prevention, screening and treatment services.

Children with birth defects not born in WA but resident in the state are not included in the Registry reports. They are, however, recorded on the Registry for such purposes as evaluation of treatment and planning of facilities for children with birth defects in WA.

Timeliness

As the combined Register was only in place from January 2010 reports prior to this date were published separately for birth defects and cerebral palsy. The latest combined publication is the 2014 Annual Report of the WA Register of Developmental Anomalies (683.0KB PDF) which includes data from 1980–2012.

Accuracy

Several validation studies addressing both accuracy and completeness of ascertainment have been conducted. Due to the fact there are multiple sources of notification, much of the information is cross-referenced for accuracy, or at least consistency. Furthermore, when data are used for research studies, inaccuracies are identified and corrected.

Accessibility

The Registry maintains an extensive library of reprints which acts as a source of information not directly available from the Registry data. Non-routine release of tabulated, non-personally identified data from WARDA is the responsibility of, and at the discretion of, the Head of the Register. The latest publications can be downloaded from the WARDA website.

Data may be requested from the data custodian at WARDA. If your proposal is approved by WARDA and only non-identifying, tabulated or statistical information is required, WARDA staff will extract the information and provide it to you. 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.
Forward copies of the Ethics Approval notifications to WARDA (Department of Health Human Research Ethics Committee will automatically do this). Once received, WARDA will extract the information and provide it to you. Final reports or papers for publication are to be vetted by the Head of WARDA before publication.
Data are provided to the International Clearinghouse for Birth Defects Surveillance and Research, and to the Australian Cerebral Palsy Register for inclusion in their Annual Reports and for research. WA data are contributing to International Clearinghouse research in Down syndrome and tracheo-oesophageal fistula.

Interpretability

WARDA codes all birth defect diagnoses with the British Paediatric Association Classification of Diseases (five digit extension of ICD9). Further interpretive commentary is provided in the Annual report.