Santé publique France’s mission is “the ongoing monitoring and observation of the population’s health status...”. To this end, in the field of congenital anomalies, Santé publique France coordinates a network of registries and contributes to their funding. Drawing on these congenital anomaly registries and medical-administrative databases within the National Health Data System (SNDS), Santé publique France:

• facilitates and supports the work of the registries in the area of monitoring and evaluating public health initiatives;

• analyzes longitudinal trends in the occurrence of congenital anomalies and regional disparities;

• helps make available epidemiological data accessible and visible;

• assesses the relevance of using medical-administrative databases to identify valid information for the epidemiological surveillance of congenital anomalies.

Epidemiological Surveillance of Congenital Anomalies and Malformations

Epidemiological surveillance of congenital anomalies arose largely in response to the increase in the number of cases of limb malformations caused by thalidomide, a drug widely prescribed to pregnant women between the 1950s and 1960s. Surveillance systems were subsequently established in several countries, very often in the form of registries, to aid decision-making in the event of an alert and to detect potential outbreaks. A registry is defined as a continuous and comprehensive collection of identifiable data concerning one or more health events in a geographically defined population. Gradually, the scope of these systems expanded to include recording the number and types of congenital anomalies, thereby also covering the evaluation of public health policies, the study of risk factors, and research.

• Congenital Malformation Registries

• Medical-administrative data

• Eurocat