Congenital anomalies are an important cause of infant morbidity, disability as well as fetal and infant mortality. Every year, around 300,000 newborns around the world die before they are 28 days old due to birth defects.*. In France, these conditions constitute the 2e cause of death before the age of 1 year and just over a quarter of neonatal causes of death.
Public Health France, as part of its missions, is in charge of monitoring congenital anomalies. This monitoring system is based in France, as in most Western countries, in particular, on collaborations with registers.
In order to complete the collaborations undertaken with the 6 existing registers, Public Health France launched a call for projects in 2020 aimed at creating a 7e congenital anomalies registry. The objective of this new register is to reinforce the monitoring of congenital anomalies and to allow the development of research work in the environmental field.
The missions of 7e congenital anomalies registry
The missions of this new registry join those of the 6 other registries of congenital anomalies, in particular:
- Ensure the epidemiological surveillance of congenital anomalies on an uncovered territory with demographic characteristics and a specific environmental context complementary to the already existing registers, by the use of an internationally recommended nomenclature, and by the creation, management and exploitation of a quality database;
- Participate in national and international surveillance, in particular by sending data annually to the national common database and to the body designated by the EU;
- Participate in health monitoring and vigilance, in particular by participating fully in the investigations and other work carried out by Public Health France;
- Promote research on congenital anomalies, particularly with regard to risk factors and in particular those not linked to the environment and exposure to teratogens or xenobiotics in collaboration with the scientific community;
- Contribute to public health activities by supporting local, regional or national health policies.
Procedures for selecting candidates
Each candidate submitted an application file, the terms of which were described in the call for projects. A scientific committee made up of 7 independent experts, selected after a call for applications published in 2020, met three times and assessed the applications.
Project selected for the creation of the 7th register
The project selected is that carried out by Dr. Julie Thomas-Chabaneix in Bordeaux, Congenital heart disease department of the foetus, child and adult – Haut Lévêque Hospital CHU Bordeaux – M3C Bordeaux Reference Center.
This new registry will be subject to an evaluation by the Registry Evaluation Committee (CER) after a period of three years.