ARCHIVED: Conclusions: Congenital anomalies surveillance in Canada: results of a 2006-2007 survey on availability of selected data variables in Canadian provinces and territories
The results of this survey demonstrate that all provinces and territories in Canada have programs that either collect data or are custodians of data sources containing information on congenital anomalies. The number of programs collecting data on the minimum data variables included in this survey is quite high, suggesting there is a strong foundation on which to develop an enhanced national model for congenital anomalies surveillance in Canada.
Compared with the current national congenital anomalies surveillance database, where data are based on administrative hospital records only (with the exception of Alberta), an enhanced national database assembled from anonymous data submitted directly by provincial and territorial systems would offer many advantages in data quality and completeness. For instance, within jurisdictions, multiple sources of data can be used to identify cases, which is greatly improved over what can be achieved using one data source alone. The opportunity for case verification; ascertainment of cases for one year after birth or more; and ascertainment of terminations of pregnancies in which fetal anomalies have been detected are also possible at a jurisdiction-level. These thorough methods of congenital anomalies surveillance are already in-place in several jurisdictions and, with support, could be established in others.
In order to realize this type of enhanced model for national congenital anomalies surveillance, ongoing work is warranted to ensure comparability of data across provinces and territories, as well as to standardize definitions and coding as much as possible. These efforts should take into consideration the approaches used by other projects such as the Public Population Project in Genomics, which aims to harmonize data collected in biobanks internationally,35 and the National Diabetes Surveillance System, which has worked to standardize case definitions, variable collection and data validation as they pertain to diabetes surveillance in Canada.32 Particular attention should also be given to improving the availability of information on recommended variables for congenital anomalies surveillance, such as parental ethnicity and socioeconomic variables, as this survey has shown that the number of provincial and territorial programs with such information currently in their databases is low.
The ultimate importance of a public health surveillance system is demonstrated by the way in which the data collected are used to improve public health. An enhanced national congenital anomalies surveillance system would allow ongoing reporting and monitoring of congenital anomalies prevalence rates, geographic trends and trends over time using more complete, accurate and timely data. In addition, because congenital anomalies are rare occurrences, pooling data from many jurisdictions allows for more powerful analyses and improved ability to detect trends and clusters. At a jurisdiction-level, in addition to traditional surveillance, congenital anomalies data can also be used for etiological research (e.g., studying environmental impacts and parental risk factors), examining health care services needs (e.g., short and long-term specialized health care services for individuals and families affected by congenital anomalies), and ultimately, for developing health policy.
The Maternal and Infant Health Section, Public Health Agency of Canada and the Demographics and Risk Indicators Working Group of the Canadian Congenital Anomalies Surveillance Network would like to thank all of the participating programs for providing the information for this report.
In the spring of 2008, the federal government announced new funding for an initiative to enhance congenital anomalies surveillance in Canada. A meeting between the Canadian Congenital Anomalies Surveillance Network, provincial and territorial representatives, and the Public Health Agency of Canada was held in Ottawa in November 2008 to initiate plans for the development of enhanced congenital anomalies surveillance in Canada.
Under this initiative, the Public Health Agency of Canada will collaborate with the provinces and territories and other stakeholders to support provincial and territorial surveillance systems with respect to congenital anomalies. Resources will be used to enhance established surveillance systems (i.e., existing congenital anomalies surveillance systems or perinatal health systems) and to support the development of new systems where there are currently none.
While working collaboratively to support the development and improvement of congenital anomalies surveillance at the provincial and territorial level, this initiative also aims to maximize comparability across jurisdictions by promoting the use of common procedures for surveillance such as consistent data variables and definitions, data collection methods, and conditions for surveillance.
Strengthened surveillance at the provincial and territorial levels will result in improved national congenital anomalies surveillance.
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