ARCHIVED: Summary: Congenital anomalies surveillance in Canada: results of a 2006-2007 survey on availability of selected data variables in Canadian provinces and territories

Summary

This report presents the results of a national survey conducted by the Maternal and Infant Health Section, Public Health Agency of Canada (PHAC) and the Demographic and Risk Indicators Working Group (DRIWG) of PHAC’s Canadian Congenital Anomalies Surveillance Network. The survey was undertaken to determine to what extent there were common data variables collected on congenital anomalies in provincial and territorial systems across Canada. The purpose was to explore alternatives to the current data sources and structure of the Canadian Congenital Anomalies Surveillance System (CCASS).

The survey was developed concurrently with a list of 85 data variables (36 minimum variables, 49 recommended) established by the DRIWG to promote the use of common standards and methods for congenital anomalies surveillance and to provide a basis for development of program-specific data collection procedures in Canadian jurisdictions. The survey questionnaire was limited to 25 of the 85 data variables, as they were considered to be the most essential for surveillance and also taking into consideration the variables that are currently part of the CCASS database. Of these, 11 corresponded to the minimum variables and 14 to the recommended variables. The survey variables covered information on maternal age, ethnicity and socio-economic information, residence, place of delivery, prenatal screening and diagnostic testing, pregnancy length and outcome, length of ascertainment period, diagnostic codes, and infant variables (sex, gestational age, plurality and birth weight). The survey also collected information on the types of data sources for these variables.

Programs that either collected data or were custodians of data sources containing information on congenital anomalies were identified as potential respondents. They included provincial/territorial government departments, perinatal programs, congenital anomaly surveillance programs, and clinical groups involved with prenatal diagnosis of congenital anomalies (e.g., maternal serum screening). Programs that had jurisdiction-wide coverage of the population and that collected data on all types of congenital anomalies were invited to complete the survey. Nineteen programs were sent a copy of the survey in 2006-2007. The survey results are based on the completed questionnaires of 16 responding programs.

Overall, all provinces and territories in Canada have programs that either collect data or are custodians of data sources containing information on congenital anomalies. These programs generally fall into three broad categories: administrative databases; perinatal database programs; and fetal anomalies and congenital anomalies surveillance programs. The number of programs collecting congenital anomalies data on the minimum data variables included in this survey was quite high, whereas the number of programs collecting data on the recommended variables was much lower. Although the type of congenital anomalies information collected by each program was not necessarily uniform, the survey results suggest that there is a strong foundation across jurisdictions on which to develop an enhanced model for congenital anomalies surveillance in Canada.

The new funding announced by the federal government in the spring of 2008 provides the opportunity to enhance congenital anomalies surveillance in Canada. Under the congenital anomalies enhancement initiative, PHAC will collaborate with the provinces and territories and other stakeholders to enhance established surveillance systems and to support the development of new systems where there is currently none. This initiative also aims to maximize comparability across jurisdictions by promoting the use of common procedures for surveillance. Strengthened surveillance at the provincial and territorial level will result in improved national congenital anomalies surveillance.