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Data Collection Overview

Victorian Congenital Anomalies Register (VIC RCA)

Data Collection Sources

Data are obtained from multiple sources: Victorian Perinatal Data Collection (VPDC) midwives’ birth notification forms, hospital sources, perinatal death certificates, autopsy reports, cytogenetics reports, maternal and child health nurses, other professionals, and others (e.g. parents).

Institutional environments

The VIC RCA is conducted by the Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) is administered by the Clinical Councils Unit, Health Services Performance and Programs Division within the Department of Health and Human Services. CCOPMM was established under section 162 of the Heath Act 1958 and continues to have legislative status as a Consultative Council under sections 33-48 of the Public Health and Wellbeing Act 2008A legislated function of CCOPMM is to establish and maintain a register of birth anomalies and disabilities.
The VIC RCA is a state-wide population based surveillance system. All notifications of birth anomalies (excluding terminations of pregnancy before twenty weeks gestation and interstate births) are linked to the Victorian Perinatal Data Collection (VPDC), to obtain an obstetric history for each case. The data items routinely maintained on the VCAR are listed in Appendix C of Birth Defects in Victoria. Further data items are available for each case of twenty weeks gestation or more as required. The Birth Anomalies Register is maintained by the Clinical Councils Unit with advice from a consultant clinical epidemiologist. In 2005-2006 cases obtained from several of the Metropolitan Level 2 hospitals have been added. This resulted in additional cases that would otherwise have been missed.

Relevance and Scope

The VIC RCA currently collects data on all birth anomalies for live births, stillbirths and terminations of pregnancy occurring since 1 January 1982, irrespective of the age at diagnosis, with a period of detection up to 18 years of age. Victoria continues to use the term ‘birth anomalies’ in line with the International Clearinghouse for Birth Defects Surveillance and Research to whom data is sent, along with many registers around the world. A birth anomaly is any abnormality of prenatal origin, either present following conception or occurring before the end of pregnancy. This includes structural, functional, genetic, chromosomal and biochemical abnormalities. The purpose of the VIC RVA is to:
• determine how often birth anomalies are occurring in Victoria and identify changing health service needs (prevalence and survival data);
• give statistical information to organisations responsible for planning and providing health care facilities for those with birth anomalies, or who provide information to those concerned about having a baby with a birth anomaly;
• provide information for epidemiological research to increase knowledge of aetiology and preventability of birth anomalies;
• assess effectiveness of primary prevention and screening programs for birth anomalies;
• respond to community and health service provider concerns about perceived clusters or changes in frequency of birth anomalies; and
• provide data to the National Perinatal Epidemiology and Statistics Unit (NPESU).
The CCOPMM relies on the cooperation of obstetricians, neonatologists, paediatricians, midwives, general practitioners and medical records personnel to assist with reporting birth anomalies and providing relevant information on each case.

Timeliness

The time period between the collection of data and publication is determined by the Consultative Council on Obstetric and Paediatric Mortality and Morbidity.

Accuracy

Data submitted to the VIC RCA are checked for completeness and accuracy and coded within the Clinical Councils Unit. New notifications can be reported using the online notification form on the CCOPMM 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 VIC RCA forms an integral part of the work. Ascertainment of terminations less than 20 weeks remains difficult.

Accessibility

CCOPMM provides data, however careful consideration is given to assure that the privacy of individuals is protected and that release of data complies with the requirements of the Public Health and Wellbeing Regulations 2009.
Formal research proposals must conform to the National Health and Medical Research Council’s National Statement on Ethical Conduct in Research Involving Humans 2007. Before any research project can access CCOPMM data, a properly constituted Human Research Ethics Committee must approve the research and a formal application must be received and approved by the CCOPMM.
All
requests for data can be made by accessing the CCOPMM website.

The reports are publicly available on the
CCOPMM website:
CCOPMM Annual Report for the Year – now includes Births in Victoria (includes some maternal morbidity) since 2009, and  incorporates the survey of Perinatal Deaths in Victoria (includes maternal death).
Birth Defects in Victoria.
VBDR (Victorian Birth Defects Register; VIC RCA was previously called VBDR)Bulletins.

Interpretability

Conditions have been classified using the British Paediatric Association (BPA) Classification of Diseases- Perinatal Supplement, compatible with International Classification of Diseases - 9th revision. It is the practice of the VIC RCA to code the syndrome and all of its manifestations. A list of Birth anomalies that are excluded from the collection can be found in the annual report, Birth Defects in Victoria, Appendix B. A definition of ‘birth defect’, replaced by the term ‘birth anomaly’ is also contained in the report.

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