Establishment of the 7th Registry of Congenital Anomalies: Results of the Call for Proposals
Following the call for proposals issued in 2020 for the creation of a seventh registry of congenital anomalies, the independent expert committee evaluated the applications and selected the operator for this new registry.
Congenital anomalies and malformations
thematic dossier
Congenital anomalies are a major cause of childhood morbidity, disability, and fetal and infant mortality. Each year, approximately 300,000 newborns worldwide die within 28 days due to congenital anomalies*. In France, these conditions are the second leading cause of death before the age of 1 and account for just over a quarter of all neonatal deaths.
As part of its mandate, Santé publique France is responsible for monitoring congenital anomalies. In France, as in most Western countries, this monitoring system relies in particular on collaborations with registries.
To complement the collaborations already established with the six existing registries, Santé publique France launched a call for proposals in 2020 to create a seventh registry of congenital anomalies. The objective of this new registry is to strengthen the surveillance of congenital anomalies and to facilitate the development of research in the environmental field.
The missions of the 7th registry of congenital anomalies
The missions of this new registry align with those of the six other congenital anomaly registries, notably:
Ensuring the epidemiological surveillance of congenital anomalies in an uncovered territory with specific demographic characteristics and an environmental context that complement existing registries, through the use of an internationally recommended nomenclature, and through the creation, management, and operation of a high-quality database;
Participating in national and international surveillance, notably by annually submitting data to the national shared database and to the body designated by the EU;
Participate in health monitoring and surveillance, notably by fully participating in investigations and other work conducted by Santé publique France;
Promote research on congenital anomalies, particularly regarding risk factors, especially those related 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.
Candidate Selection Process
Each candidate submitted an application package, the requirements for which were outlined in the call for proposals. A scientific committee composed of 7 independent experts, selected following a call for applications published in 2020, met three times and evaluated the applications.
Project selected for the creation of the 7th registry
The selected project is led by Dr. Julie Thomas-Chabaneix in Bordeaux, Department of Congenital Heart Diseases in the Fetus, Child, and Adult – Haut Lévêque Hospital, Bordeaux University Hospital – M3C Bordeaux Reference Center.
This new registry will be subject to an evaluation by the Registry Evaluation Committee (CER) after a three-year period.