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Data Collection Overview

New South Wales Register of Congenital Conditions (NSW RCA)

Data Collection Sources

Notifications come from the Perinatal Data Collection (PDC) form as well as notifications from hospitals, cytogenetic laboratories and individual health care providers.

Institutional environments

The NSW Register of Congenital Conditions is a population-based surveillance system established to monitor congenital anomalies detected during pregnancy or at birth, or diagnosed in infants up to one year of age. There are two types of congenital condition notification forms. These are:
• Notification of scheduled congenital conditions diagnosed by prenatal diagnosis. This form is used when notifying congenital conditions detected in the fetus during pregnancy, regardless of whether the pregnancy continues.
• Notification of a scheduled congenital condition diagnosed in an infant. This form is used to notify congenital conditions detected in stillborn or live born babies up to one year of age.
Both of these forms are provided in triplicate, with the original sent to the NSW Ministry of Health, one copy for the hospital medical record and one copy for the parent or family. Information for parents and families concerning the Register is printed on the reverse side of the parent copy of both notification forms. In the case of a multiple pregnancy or multiple births where both babies are affected, a separate form must be completed in full for each fetus or baby.
Notifications are sent to the NSW Register of Congenital Conditions at the NSW Ministry of Health’s Centre for Epidemiology and Evidence.
The Register was established in 1990. From 1 January 1998, congenital conditions detected during pregnancy, or in a child less than one year of age, have been notifiable to the NSW Department of Health, under the NSW Public Health Act 1991.
The Register is administered by the Centre for Epidemiology and Evidence, NSW Ministry of Health.
The Register is supported by an advisory committee, comprising a panel of clinical experts representing the following specialties: genetics, dysmorphology, neonatology, obstetrics and gynaecology, midwifery, bioethics, epidemiology and a community representative from the Association of Genetic Support of Australasia.

Relevance and Scope

The Register collects data pertaining to congenital conditions regardless of the outcome of pregnancy. This includes notifications of live births, stillbirths, terminations of pregnancy and spontaneous abortions. The collection includes babies up to one year of age. A congenital condition is defined as any structural defect anomaly or chromosomal abnormality detected during pregnancy, at birth, or in the first year of life, excluding birth injuries and minor anomalies such as skin tags, positional talipes, birthmarks, or clicky hips.
There are three types of conditions that are reported to the Register:
• Conditions that affect the growth, development and health of the baby that are present before birth, such as cleft lip, dislocated hip and problems with the development of the heart, lungs or other organs
• Conditions due to changes in the number of the baby's chromosomes, such as Down Syndrome
• Four conditions due to changes in the baby's inherited genetic information: cystic fibrosis, phenylketonuria, congenital hypothyroidism and thalassemia major.


The delay between data collection and publication is one to two years. New South Wales Mothers and Babies 2010, was published in November 2012 using data up to 2010.


Data submitted to the Register are checked for any discrepancies, and further information is requested from the hospital or reporting clinician if information received is inconsistent or incomplete.


The activities of the Register include: annual publication of information on congenital conditions in NSW; provision of information to health services to assist in service planning and monitoring of child health, and investigation of specific issues; provision of information in response to specific requests from the public, health professionals, and other government departments; and provision of data to the AIHW National Perinatal Epidemiology and Statistics Unit (NPESU) for monitoring of congenital conditions at a national level, and incorporation into the NPESU’s Congenital Anomalies in Australia Reports. The NPESU is also responsible for providing Australian information on congenital conditions to the International Clearinghouse for Birth Defects Monitoring Systems, a non-governmental organisation of the World Health Organization.
Data for research purposes may be provided in 2 formats: aggregate information similar to that contained in the Mothers and Babies report, and data concerning individuals with identifying
information removed. All requests for data should be submitted in writing to the Director, Centre for Epidemiology and Research. Requests for data concerning individuals for sufficiently important research purposes will be referred to the NSW Population and Health Services Research Ethics Committee. Procedures for release of personal information are described in the Department’s Policy Directive PD2012-051 – Disclosure of unit record data held in NSW Ministry of Health Data Collections for the purposes of research or management of health services, which is available on the NSW Department of Health website.

The most recent annual report of the Register is included in New South Wales Mothers and Babies 2010.


Inclusions and exclusions are described in the Appendix of the New South Wales Mothers and Babies 2010 report. Examples of inclusions and exclusions are also included in the NSW Health Policy Directive Congenital Conditions Register – reporting requirements.

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