EUROCAT Northern Netherlands

Congenital anomaly registry and research group. Cohort

Congenital anomaly registry and research group.

The EUROCAT Northern Netherlands (NNL) database provides accurate and reliable data on congenital anomalies and associated risk factors within the registration area Groningen, Friesland and Drenthe.

EUROCAT data is used for surveillance of congenital anomalies and for scientific research. The ultimate aim is to contribute to the promotion of healthy pregnancies in the future. Congenital anomalies occur in 2-3% of children and are one of the leading causes of childhood mortality and long-term disability. They have a large impact on families, health care systems and society. Examples of common congenital anomalies are heart defects, orofacial clefts, clubfeet and trisomy 21. Congenital anomalies can have a genetic aetiology, but often both environmental and genetic factors may play a role. Some congenital anomalies can be prevented, for example by adequate intake of folic acid or by switching to different medications prior to pregnancy.

EUROCAT NNL aims to:

contribute to the promotion of healthy pregnancies in the future;
provide essential epidemiological information on congenital anomalies in Northern Netherlands;
facilitate the early warning of new teratogenic exposures;
act as an information and resource center for the population, health professionals and managers regarding clusters or exposures or risk factors of concern;
evaluate the effectiveness of primary prevention;
assess the impact of developments in prenatal screening.

More information about EUROCAT as part of an European network.

All children and foetuses with a congenital anomaly whose mother was a resident of Groningen, Friesland or Drenthe at the time of birth. Registration is an ongoing process; children can be registered until 10 years after birth and at all gestational ages. Still births, miscarriages and terminations of pregnancy are also included in the registry.
- the child or foetus was diagnosed with at least one major congenital anomaly, according to the EUROCAT criteria;
- the parents gave written informed consent to register the data of their child in the EUROCAT database;
- in addition, we register (minimal) core data of children born in 2010 or later, whose parents did not respond to several requests for registration of their child in the EUROCAT database (so called non-responders). Parents are informed of this procedure by letter.
Please visit the UMCG Research Data Catalogue for more detailed information on our data and samples.

Parents complete questionnaires including questions on:
- smoking habits;
- alcohol consumption;
- recreational drug use;
- use of folic acid;
- infections and vaccinations during pregnancy (e.g. COVID-19);
- maternal BMI;
- medication use;
- chronic illnesses;
- assisted conception;
- maternal and paternal education and occupation;
- socio-economic status;
- prenatal screening and diagnostics.
In addition, data from community pharmacies are used to collect data on medication dispensed in the period from 3 months before and during pregnancy. After the information of the pharmacy is received, the mother is asked, via the questionnaire, whether she has actually taken the medication and if she has taken any over-the-counter medication.

The response rate to the questionnaire is about 80%. General statistics are available from the Central Bureau of Statistics (CBS). No information on non-malformed infants is collected. Also, no biomaterials are being collected by EUROCAT NNL. Guidelines for data registration EUROCAT.
Eurocat: onderzoek naar aangeboren afwijkingen (in Dutch)

Relevance

How our research benefits to society

Our research benefits society in many ways. One example is that we investigate the sensitivity of the Dutch prenatal screening program to detect congenital anomalies. We also study if the changes in prenatal screening program have an effect on the timing of detection of congenital anomalies or on the outcome of pregnancy. In addition, we monitor the prevalence of congenital anomalies in our region. When there is a cluster of a specific congenital anomaly, we carry out additional investigations. Also, we monitor whether there are longer lasting (upwards or downwards) trends of congenital anomalies.