Objectives
Congenital anomalies represent a significant cause of morbidity, disability, and infant mortality. It is a relatively common health event that affects approximately 3 to 4% of births. Congenital anomaly registers are essential tools for the epidemiological surveillance of congenital anomalies. In France, there are currently seven registers, including the Register of Congenital Anomalies in Paris.
The objectives of congenital anomaly registers are:
- To ensure epidemiologic surveillance of congenital anomalies in France and Europe;
- To conduct epidemiological studies on the frequency and determinants of one or more congenital anomalies;
- To assess in the general population the impact of health activities on the screening of congenital anomalies;
- To contribute to the etiological research of congenital anomalies through collaborative studies in France and Europe.
Method
- Case definition: Cases of malformations and chromosomal abnormalities defined according to the methods defined by the EUROCAT, the European Surveillance for Congenital Anomalies (including common definition of malformations, coding guidelines and list of minor abnormalities to exclude). Malformations are recorded both prenatally and during the first week of life. All pregnancy outcomes are recorded: live births, termination of pregnancy for fetal anomaly, stillbirths.
- Population: Continuous registration for women living in Paris or in its surrounding suburbs (districts 92, 93, and 94) who give birth or have pregnancy termination for fetal anomaly (TOPFA) in Paris (N ~39000 per year).
- Retrospective data collection from the medical records of women and children, with active case-finding of eligible cases in various services (maternity units, multidisciplinary prenatal diagnosis centers, neonatology, intensive care, pediatric surgery, cytogenetics and fetal pathology, medical information departments or PMSI, health certificates).
Funding
The registry receives funding from Santé publique France as well as Inserm.
Contacts
Babak Khoshnood, registry co-leader (babak.khoshnood@inserm.fr)
Nathalie Lelong, registry co-leader (nathalie.lelong@inserm.fr)
Isabelle Monier, midwife and epidemiologist (isabelle.monier@inserm.fr)
Valérie Labarre, midwife, field investigator (valerie.labarre@inserm.fr)
Collaborations
European surveillance of congenital anomalies (JRC-EUROCAT)
Safety of medication use in pregnancy (Euromedicat)
Establishing a linked European Cohort of Chilldren with Congenital Anomalies (Eurolinkcat)
International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR)
