Objectives
Congenital anomalies are an important cause of perinatal and infant mortality, morbidity, and disability. They are relatively frequent health events, affecting approximately 3 to 4% of births.
Congenital anomaly registries constitute an essential tool for the epidemiological surveillance of congenital anomalies. Their mission is to ensure the continuous and exhaustive recording, within a defined geographical area, of all births in which congenital anomalies are diagnosed during pregnancy or after birth. They also contribute to the evaluation of the impact of public health actions. In addition, registries provide essential data for etiological research on congenital anomalies, which is made challenging by the low prevalence of most anomalies and the presence of multiple exposure factors.
In France, there are seven congenital anomaly registries, including the Paris registry.
The objectives of congenital anomaly registries are:
- to ensure the epidemiological surveillance of congenital anomalies within a defined geographical area;
- to contribute to the surveillance system for congenital anomalies in France and in Europe;
- to monitor variations in the frequency of congenital anomalies at both local and European levels;
- to conduct epidemiological studies on the frequency and determinants of one or more congenital anomalies;
- to evaluate, at the population level, the impact of health interventions on the screening of congenital anomalies;
- to assess the impact of prevention policies on the frequency of congenital anomalies (for example, preconceptional folic acid intake to prevent neural tube defects);
- to contribute to etiological research on congenital anomalies through collaborative French and European studies.
Method
- Case definition: all cases of congenital anomalies (including chromosomal and genetic anomalies) detected prenatally up to hospital discharge of the child, among live births, stillbirths (≥ 22 weeks of gestation), and terminations of pregnancy for fetal anomaly (TOPFA), regardless of gestational age.
remaPAR follows the methodology defined by the European network JRC-EUROCAT, which coordinates the activities of 41 congenital anomaly registries across 20 European countries. - Population: women residing in Paris and giving birth in Paris, representing approximately 22,000 births annually.
- Case identification: case identification and data collection are carried out by midwives specifically trained in remaPAR data collection procedures.
Cases are identified:
– in collaboration with various departments within participating maternity units and hospitals, including prenatal diagnosis units, neonatology and neonatal intensive care units, as well as specialized services such as pediatric cardiology, pediatric urology, visceral surgery, cytogenetics, and fetopathology, and also the hospital medical information departments (DIM);
– through the 8-day child health certificates, in which congenital anomalies may be recorded (in collaboration with the Paris Department for Family and Early Childhood).Cases are then identified and subsequently validated (or ruled out) after consultation of these multiple data sources.
Funding
The registry receives funding from Santé publique France as well as Inserm.
Contacts
Isabelle Monier, scientific coordination lead (isabelle.monier@inserm.fr)
Nathalie Lelong, co-lead for scientific coordination (nathalie.lelong@inserm.fr)
Coralie Chiesa-Dubruille, project manager (coralie.chiesa-dubruille@inserm.fr)
Amélie Theunissen, data collection officer (amelie.theunissen@inserm.fr)
Neil Derridj, associate researcher (neil.derridj@aphp.fr)
For general inquiries: regmalf.paris@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)
