History and Funding
The registry started with a pilot study on procedures for registration of congenital anomalies in 1989. In 1990 the registry formally started. Since 1997, the whole province of Antwerp has been covered. The registry is developed in collaboration with the Provincial Government and the University of Antwerp. The programme is funded by the Provincial Government of Antwerp. The Registry has been a member of EUROCAT since 1990.
The registry covers about 20,000 births annually, these are all births in the province of Antwerp, about 16% of the births in Belgium. The registry is population-based which means that all mothers resident in the province of Antwerp at the time of birth of their baby are included.
Sources of Ascertainment
Records are actively collected form maternity, pediatric and neonatal units by registry staff who visit each maternity, pediatric- and neonatal unit in the covered region. Basic information on children born with congenital anomalies is gathered from 16 hospitals. More detailed information on diagnosis and exposure during pregnancy is gathered from gynecologist and pediatricians’ records. Information about the parents is obtained from general practitioners and social welfare nurses. Clinical geneticists, surgeons, pathologists and the centre for detection of metabolic diseases are also contacted for more information. Paediatric cardiology centers supply diagnostic information when requested by the registry for specific cases. Cytogenetic information is gathered on the cases suspected with a genetic anomaly.
All cases with a congenital anomaly diagnosed prenatally or in the first year of life are registered. Reporting by hospitals and health workers is voluntary.
Maximum Age at Diagnosis
Up to 1 year of age.
Termination of Pregnancy for Fetal Anomaly
Termination of pregnancy is registered. Termination of pregnancy is legal under 13 weeks. If congenital anomaly is diagnosed, there is no upper gestational age for termination.
Stillbirth and Early Fetal Deaths
The stillbirth definition for denominators is: a baby which is not viable with a gestational age of >180 days. Stillbirths are registered. Early fetal deaths and spontaneous abortions with a gestational age of less then 20 weeks are not registered.
Exposure Data Availability
Exposure information includes: maternal drug use, maternal smoking and alcohol abuse, maternal and paternal diseases and family history, parental occupation.
Denominators and Controls Information
Background data on births are retrieved from the population databases of the local authorities and from the study center for perinatal epidemiology in the Flanders region. Controls are not included in the registry, but data can be ascertained for specific studies.
Ethics & Consent
The registries’ procedure was submitted to the Belgian privacy committee. The approved procedure foresees that the registry provides information to the parents on aims and methods of registration, data protection and the right to opt out. Information on the registration of CA is given to the parents by medically qualified staff treating the child and other HCPs treating the child. No ethics committee approval is required for studies that use non-identifiable data.
Address for further Information
Dr Vera Nelen,
Princiaal Instituut voor Hygiene,
Tel: +32 3 2591270
Fax: +32 3 2591201
Last update on 31.07.2019