Member details

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Short name:

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History:

The programme began in 1963 as a general Registry for Handicapped Children. This was disbanded in 1980 and continued as a surveillance system for live and stillborn infants with congenital anomalies who were born in the province of Alberta.

Size and coverage::

All live and stillbirths in the province are covered which at present comprise about 50,000 births per year. The definition of stillbirth is 20 weeks or more gestation or 500 grams or more birth weight. The vast majority of births occur in hospital (approximately 97%). Since 1997, fetuses with congenital anomalies who were either spontaneously lost before 20 weeks or where there was a termination of pregnancy as a result of prenatal diagnosis have been included.,

Legislation and funding:

Although reporting is voluntary, the Health Information Act allows ACASS to receive and others to submit data on infants with congenital anomalies. The system is run by members of the Department of Medical Genetics, Alberta Children’s Hospital - University of Calgary, reporting to Alberta Health Services.

Sources of ascertainment:

Reports are obtained from physicians’ notices of birth, live birth and stillbirth registrations, death registrations and a special congenital anomalies reporting form (CARF) from hospitals. The latter is based on discharge diagnosis, including readmissions for any reason up to one year of age. Additional sources include cytogenetics laboratories, the provincial metabolic screening programme and specialty clinics such as medical genetics.

Exposure information:

None is routine

Background information:

Linkage studies are possible with other statistical data from Alberta Health.

Addresses and staff:

R. Brian Lowry, MD, Programme Director,ACASS/Clinical Genetics,Alberta Children’s Hospital,28 Oki Drive NW,Calgary, AB, Canada. T3B 6A8

Phone:

Fax:

E-mail:

International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects