Victorian Congenital Anomalies Register (VIC RCA)Data are collected from multiple sources: Victorian Perinatal Data Collection (VPDC), hospitals, maternal and child health nurses, cytogenetic laboratories, death certificates, autopsy reports, other professionals (doctor, nurse, midwife), other (parents).
The Victorian Congenital Anomalies Register (VCAR) is the legislative responsibility of the Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) and is administered by the Consultative Councils Unit in Safer Care Victoria.
CCOPMM was established under section 162C of the Health Act 1958 and continues to have legislative status as a Consultative Council under the Public Health and Wellbeing Act 2008 (sections 33-48). A legislated function of CCOPMM is to establish and maintain a register of birth anomalies and disabilities. The VCAR was first established in 1982 under the Health Act 1981.
The VCAR collects notifications of congenital anomalies in children from before birth to six years of age. All notifications of congenital anomalies (excluding terminations of pregnancy before twenty weeks gestation and interstate births) are linked to the Victorian Perinatal Data Collection (VPDC), to obtain a maternity episode of care for each case.
The data items routinely maintained on the VCAR are listed in Appendix 3 of Congenital anomalies in Victoria. The VCAR has collected data on all congenital anomalies for live births, stillbirths and terminations of pregnancy since 1 January 1982. The VCAR collects congenital anomaly data from birth to six years of age, irrespective of the age at diagnosis. Victoria uses the term ‘congenital anomaly’ in line with current World Health Organisation terminology. A congenital anomaly is any abnormality occurring before birth. This includes structural, functional, genetic, chromosomal and biochemical abnormalities. They can be detected before birth, at birth or in early childhood. The VCAR is used for:
· planning and providing healthcare to people with congenital anomalies
· information for families concerned about having a baby with a congenital anomaly
· epidemiological research in the aetiology and preventability of congenital anomalies
· assessing the effectiveness of primary prevention and screening programs
· informing the need for additional primary prevention strategies or screening programs
· responding to concerns about potential clusters or trends in congenital anomalies.
· determine how often birth anomalies are occurring in Victoria and identify changing health service needs.
The CCOPMM relies on the cooperation of midwives, maternal and child health nurses, paediatricians, health information managers at hospitals with maternity and paediatric services and cytogenetic services in Victoria to assist with reporting congenital anomalies. The time between the collection of data and publication is determined by the Consultative Council on Obstetric and Paediatric Mortality and Morbidity and is currenlty produced bi-annually. Data submitted to the VCAR are checked for completeness and accuracy within the Consultative Councils Unit. New notifications can be reported using the online notification form on the Safer Care Victoria website. Extensive data cleaning is carried out when all data for the calendar year have been entered. Validation activities to assess, maintain and improve quality of data provided to the VCAR forms an integral part of the work. Ascertainment of terminations less than 20 weeks remains difficult A request for data can be made to the CCOPMM who must ensure that the privacy of individuals is protected and that release of data complies with the requirements of the Public Health and Wellbeing Regulations 2009.
Before deidentified CCOPMM data are provided for any research, a Human Research Ethics Committee must approve the research and a formal application must be received and approved by CCOPMM.
Research proposals must conform to the National Health and Medical Research Council’s National Statement on Ethical Conduct in Research Involving Humans 2007. All requests for data can be made by accessing the CCOPMM website.
Data from the VCAR is used in reports available on the CCOPMM website including:
• CCOPMM Annual Report for the Year –includes Births in Victoria (includes some maternal morbidity), perinatal deaths, deaths of children and adolescents and maternal deaths.
• Congenital anomalies in Victoria Conditions are classified using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification. It is the practice of the VCAR to code the syndrome and all its manifestations. A list of Birth anomalies that are excluded from the collection can be found in the biennial report, Congenital anomalies in Victoria, Appendix 2. |
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