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Data Collection Overview

South Australian Birth Defect Register (SA RCA)

Data Collection Sources

The sources of notification include doctors and other health professionals involved with the care of children with birth defects in hospitals, special paediatric assessment, treatment and rehabilitation centres and private practices; the Pregnancy Outcome Statistics Unit of SA Health (from birth notifications); the State Perinatal Autopsy Service and other pathology services; diagnostic services including laboratories diagnosing cytogenetic or biochemical abnormalities, and organ imaging departments.

Institutional environments

The South Australian Birth Defects Register is a population-based collection of information on birth defects. The Register collects information on all children born in South Australia on or after 1 January 1986, who have a significant birth defect detected in the first five years of life. It complements and extends the collection of congenital abnormalities detected in the perinatal period, notified by doctors to the Pregnancy Outcome Statistics Unit of SA Health.
The South Australian Birth Defects Register receives notifications of children with birth defects under the provisions of the South Australian Health Care Regulations 2008, under the Health Care Act 2008. Although notification does not require parental consent, provisions are made to inform the public and parents about the Register. Confidentiality provisions require the Register to maintain the confidentiality of notified information, whilst allowing the release of data to certain persons for specified purposes. The Register has developed guidelines to enable the confidential management of personal information in accordance with these provisions.

Relevance and Scope

A birth defect is defined within the Register as any abnormality, structural or functional, identified up to five years of age, provided that the condition had its origin before birth.
This includes terminations of pregnancy at any gestation performed due to a diagnosis of a birth defect; stillbirths and newborn babies with birth defects; children diagnosed with a birth defect after the neonatal period and prior to their fifth birthday. The scope includes structural (e.g. Spina Bifida); chromosomal (e.g. Down syndrome) and biochemical (e.g. Phenylketonuria) defects. For Register purposes, single gene defects, e.g. Neurofibromatosis, Cystic Fibrosis and Muscular Dystrophy, are also considered to be birth defects, although clinical manifestations may not appear until well after birth, and some may not cause malformations. Most minor malformations are excluded unless they are disfiguring, require treatment, or accompany another defect.
The birth defects register is designed to:
• establish local prevalence rates for birth defects;
• monitor the occurrence of defects over time; information about geographical area allows investigation into suspected teratogens;
• increase community knowledge about birth defects through education and by acting as a source of information;
• utilise local prevalence rates to assist in the planning of health care facilities; and
• create an opportunity for epidemiological studies on the causation of birth defects, as an accurate diagnostic index for clinical research.

Timeliness

The time period between the collection of data and publication is currently three years. The South Australian Birth Defects Register Report (1.33MB PDF) is published annually with the latest report being 2007.

Accuracy

Ascertainment of birth defects will be incomplete in the first few years of life of each birth cohort. Data collection to five years of age, the use of multiple notification sources, and confirmation of diagnoses by clinicians and pathologists increases the accuracy of final diagnoses, and with it the value of the Register.

Accessibility

The Register regularly contributes data for the Australian Congenital Anomalies Monitoring System (ACAMS) as well as the Australian Cerebral Palsy Register, and also provides data to the ongoing South Australian Burden of Disease Study, undertaken by SA Health.
In some circumstances, information may be provided to the notifying doctor for release to parents and children as part of the broader information available to the doctor, and with relevant counselling.
Identifying data will not be released for clinical audit or another clinical purpose unless the clinician or agency requiring the information was the original source of all cases required for that purpose. The Register receives many requests for information from government departments, health professionals in the community, other birth defect registers, researchers and students who require statistics on the prevalence of birth defects in South Australia.
The SA RCA is involved in several research projects and produces the SA Birth Defects Register Annual Report, which incorporates the Annual Report of Prenatal Diagnosis in South Australia. The most recent report published in 2010 is the 2007 Annual report (1.33MB PDF).
Other publications are also available online.

Interpretability

Examples of the birth defect inclusions and the exclusions are listed in the Annual Report of South Australia Birth Defects Register as well as the definitions used for recording conditions on the Register.

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