Congenital Malformation Registries
In France, the surveillance of congenital anomalies relies primarily on registries that collect and record cases and contribute to the analysis and study of trends in incidence rates, as well as to the detection and investigation of clusters of cases. In addition to this epidemiological monitoring, the data produced by the registries are used to test hypotheses or to conduct etiological studies on suspected teratogenic effects. For example, the association between sodium valproate and spina bifida was identified through the work of the Centre-Ouest registry (now split into two registries: Auvergne and Rhône-Alpes)1.
France currently has six congenital anomaly registries covering 19% of births and maternity wards in 19 departments.
The main characteristics of the French registries are summarized in the table below.
Key characteristics of French congenital malformation registries | |||||
Registers |
Year established |
Departmentscovered |
Population covered |
Number of births(INSEE 2015) |
Recall period |
Antilles |
2008 |
Martinique, Guadeloupe |
Mothers residing and giving birth in the covered departments |
8,692 |
1 year after birth |
Auvergne |
1997 (census since 1983) |
Allier, Cantal, Haute-Loire, Puy-de-Dôme |
Mothers giving birth in the covered departments |
12,674 |
1 year after birth |
Brittany |
2010 (Sept. 1) |
Ille-et-Vilaine, Côtes-d'Armor, Finistère, and Morbihan |
Mothers residing in the covered departments |
35,522 |
1 year after birth |
Paris |
1981 |
Paris |
Mothers residing in Paris and giving birth in a Parisian maternity hospital* |
24,996 |
Discharge from the maternity ward (7 days) |
La Réunion |
2001 |
Reunion Island |
Mothers residing and giving birth in the covered departments |
14,199 |
1 year after birth |
|
Rhône-Alpes (Remera) |
2008 (census data since 1976, including the Centre-Ouest region) |
Rhône, Isère, Savoie, Loire (2008–2010) Ain, Rhône, Isère, Loire (from 2011) |
Mothers giving birth in the covered departments |
57,037 |
1 year after birth |
*Data is also available for mothers residing in the Petite-Couronne and giving birth in Paris.
The Alsace registry, created in 1979, ceased operations in 2014.
As part of epidemiological surveillance, the registries record cases of anomalies and malformations among live births, stillbirths at 22 weeks of amenorrhea or later, and medical terminations of pregnancy (MTP) regardless of gestational age. Anomalies and malformations are recorded in the population of mothers residing in or giving birth in the areas covered by the registry, whether isolated or associated, with normal or abnormal karyotypes. Only minor malformations (e.g., nevi) and metabolic anomalies are excluded.
As part of the coordination of French registries, it was decided to produce detailed indicators for 21 congenital anomalies. These were selected due to their epidemiological significance in terms of frequency and severity.
These 21 anomalies are as follows:
1 Robert E, Guibaud P. Maternal valproic acid and congenital neural tube defects. Lancet (Lond, Engl). 1982 Oct 23, 2(8304):937.
Learn more |
- Paris Registry: http://www.epopé-inserm.fr/grandes-enquetes/registre-des-malformations-congenitales-de-paris - REMERA Registry (Rhône-Alpes): https://www.remera.fr/ - Réunion Island Registry: http://remacor.re/ - Brittany Region Registry: https://epidemiologie-france.aviesan.fr/fr/epidemiologie-france/fiches/registre-des-malformations-congenitales-en-bretagne-registre-qualifie-2013-2015- Auvergne Region Registry: https://epidemiologie-france.aviesan.fr/epidemiologie-france/fiches/centre-d-etude-des-malformations-congenitales-en-auvergne-registre-qualifie-2012-2015#tab_3 |
