Member details

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History:

Eurocat Northern Netherlands (NNL) started in 1981.

Size and coverage::

The registry is population-based, including babies born to all mothers resident in the registration area. In the beginning, the program covered 7,500 births annually in the province of Groningen and the northern part of the province of Drenthe. From 1989 onwards, coverage was gradually increased to 20,000 births annually in the provinces of Groningen, Friesland and Drenthe. In recent years the number of births in the region decreased to 18.500, approximately 10% of all births in the Netherlands. Home deliveries (25% of births per year) are included and it is estimated that only a few percent of resident mothers would give birth outside the defined registry area.

Legislation and funding:

The registry is funded by the Dutch Ministry of Health, Welfare and Sports and is associated with the Department of Genetics of the University Medical Centre of Groningen.

Sources of ascertainment:

Children and foetuses with congenital anomalies diagnosed before or after birth are eligible for registration at the Eurocat NNL registry, if the mother lived in the region at the time of birth and the child is not older than 10 at notification. There is no lower limit for gestational age, spontaneous and induced abortions are included. Notification of children and foetuses with congenital anomalies is voluntary.  Registry personnel are actively involved in case ascertainment, using multiple sources such as obstetric records, hospital administration data, pathology records, etc. For cases reported to the registry it is verified whether any genetic tests were performed and test results are registered in the database.  A number of frequently occurring mild anomalies is not registered, unless they occur in combination with other serious congenital anomalies. If new information becomes available for registered children before 10 years of age, the files are updated.

Exposure information:

Since 1997 parents have been asked to fill out a questionnaire including questions on occupational activities, assisted conception, use of folic acid, smoking habits, alcohol consumption, recreational drug use, over the counter medication use, chronic illnesses  and socioeconomic status. In addition, data from community pharmacies are used to collect data on medication dispensed in the period from 3 months before and during pregnancy.

Background information:

Addresses and staff:

Dieuwke Broekstra, registry leader, Eurocat Northern Netherlands,Department of Genetics, University Medical Center Groningen,PO Box 30.001, 9700 RB Groningen, The Netherlands, Website: www.eurocat.umcg.nl

Phone:

Fax:

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International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects