5.1.2 Monitoring Congenital Anomalies

  • Administrative databases, perinatal databases, congenital anomalies surveillance programs
  • Administrative databases, perinatal databases, fetal anomaly databases
  • Administrative databases, perinatal databases
  • Administrative databases
Alberta
British Columbia
Manitoba
New Brunswick
Newfoundland and Labrador
Nova Scotia
Northwest Territories
Nunavut
Ontario
Prince Edward Island
Quebec
Saskatchewan
Yukon
AB BC MB NB NL NT NS NU ON PE QC SK YT

The Canadian Congenital Anomalies Surveillance System (CCASS) gathers and collates data from hospital databases and from some provincial congenital anomalies surveillance systems. However, the collection and recording of information regarding congenital anomalies is not standardized across the country.1 Different provinces test for different conditions, use different sources of data, and assess the presence of congenital anomalies in their populations differently. For example, some include data on fetal anomalies from pregnancies terminated following a prenatal diagnosis, while others do not.1,2

1Little J, Potter B, Allanson J, Caulfield T, Carroll JC, Wilson B. Canada: Public Health Genomics. Public Health Genomics. 2009;12:112–120.
2Demographics and Risk Indicators Working Group, C.C.A.S.N., Public Health Agency of Canada. Congenital Anomalies Surveillance in Canada: Results of a 2006–2007 Survey on Availability of Selected Data Variables in Canadian Provinces and Territories. Ottawa: Public Health Agency of Canada, 2010

Implications

The lack of standardization makes it difficult to compare data across provinces and territories. A new initiative to improve the current system by strengthening surveillance at the provincial and territorial level is underway to address the limitations in collection and reporting of data in the future. Congenital anomalies are an important cause of childhood death, chronic illness, and disability. There is a need to develop standardized methods of coding data relating to congenital anomalies, along with better registration and surveillance. Further research about the causes of congenital anomalies is needed.