History and Funding
The registry of Hainaut-Namur was initiated in 1978 and it started in 1979. It has been a member of EUROCAT since the beginning. From 1979 to 1990, it was located at the School of Public Health of the Catholic University of Louvain (Brussels). Since 1990, it was integrated into the Centre of Human Genetics of the Institute of Pathology and Genetics (Charleroi (Gosselies), Belgium). As a part of the Institute of Pathology and Genetics of Charleroi, it is supported by an annual grant from the Institute of Research in Pathology and Genetics of Charleroi. From 2001 it is also partly supported by the Ministry of Public Health of Wallonia (www.wallonie.be).
The registry annually covers approximately 12,000 births in the provinces of Hainaut (East) and Namur (Population-based II = All mothers delivering within defined geographic area, irrespective of place of residence), which represented about 11% of all births in Belgium.
Sources of Ascertainment
Prenatal and delivery units, neonatal and pediatric departments divided into 13 hospitals. All cytogenetic, genetic and pathological data including the examination of aborted fetuses are regionally concentrated in the Institute of Pathology and Genetics of Charleroi (Gosselies). Children with malformations are registered up to one year of age.
Maximum Age at Diagnosis
Prenatal diagnosis, first week of life with follow-up to 1 year of age.
Termination of Pregnancy for Fetal Anomaly
Voluntary termination of pregnancy is legal in Belgium up to 12 weeks of gestation. However if a severe congenital anomaly is diagnosed later, there is no upper age limit for termination but this happens under the strict surveillance of an ethical committee. Theoretical access to information is available on all cases of termination of pregnancy as they are registered, however, in practice ascertainment is slow to process.
Stillbirth Definition and Early Fetal Deaths
Stillbirth definition is: weight ≥ 500 gr or ≥ 22 weeks. Stillbirths are registered. Early fetal deaths/spontaneous abortions are included if the gestational age is greater than or equal to 20 weeks (weight is not a factor). Early fetal deaths/spontaneous abortions are registered. Autopsy rates are as follows: stillbirths 52% for all cases (95% of cases of malformations), induced abortions virtually 100%, early neonatal deaths (0-7 days) 52% for all cases (95% of cases of malformations), later deaths 1 week to 1 year unknown and deaths with congenital anomaly 48% in 1992-94 compared with 25% in 1982.
Exposure Data Availability
Exposure information: All that concerns information of maternal diseases during pregnancy, maternal drugs, occupations and genetic data is available.
Denominators and Controls Information
Background data on births are available from national and regional institutes of statistics. It is also based on our own statistics in collaboration with the Center of Human Genetics. Recently, a collaboration with the CEpiP has been initiated (Centre d’Epidemiologie Périnatale).
Address for Further Information
Prof. Christine Verellen – Dumoulin
Centre de Génétique Humaine IPG
Institut de Pathologie et de Génétique
Avenue G. Lemaître, 25
6041 Charleroi (Gosselies) Belgium
Tél. : +32(0)71/44.71.84
Fax : +32(0)71/47.15.20