EUROCAT is a European network of congenital anomaly registries. The EUROCAT Northern Netherlands 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. 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 Northern Netherlands

  • Is part of the EUROCAT and ICBDSR network
  • Is funded by the Netherlands Ministry of Public Health, Welfare and Sports (VWS)
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Relevance

How our research benefits to society

EUROCAT Northern Netherlands started in 1981 and has six main research interests:

  • The registry

    • is population-based, including babies born to all mothers resident in the registration area.
    • covers the provinces of Groningen, Friesland and Drenthe.
    • records all children and fetuses born with a congenital anomaly, irrespective of gestational age.

    Parents complete questionnaires including questions on

    • occupational activities
    • assisted conception
    • use of folic acid
    • smoking habits
    • alcohol consumption and recreational drug use
    • medication use
    • chronic illnesses
    • 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. After the information of the pharmacy is received, 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. See for more information on the data collection.

  • The prevalence of congenital anomalies in Northern Netherlands and other European regions covered by EUROCAT is presented on the EUROCAT network website, see https://eu-rd-platform.jrc.ec.europa.eu/eurocat/eurocat-data/prevalence_en

    The EUROCAT network performs each year a trend and cluster analysis for each registry and all registries combined to investigate whether more children with specific congenital anomalies are born than expected.

  • Annually, we do surveillance to investigate whether certain medications are associated with specific congenital anomalies. In addition, we are involved in several studies investigating medication use in pregnancy. We are part of EUROmediCAT, a European research consortium dedicated to improving medication safety in pregnancy. Also, we provide data for the ConcePTION project, a project funded by the Innovative Medicines Initiative, which aims to provide more information on the safety of medication use during pregnancy and breastfeeding.

  • Many congenital anomalies are thought to have multifactorial origin, in which environmental factors as well as genetic factors play a role. We investigate several environmental factors to investigate if they can increase the risk of congenital anomalies. Examples of those factors are: occupational exposure, air pollution and infections like SARS-CoV-2. We also investigate the effect of folic acid supplementation to prevent neural tube defects (anencephaly, encephalocele and spina bifida), heart defects and orofacial clefts.

  • We participate in EUROlinkCAT, a European Horizon 2020 project. EUROlinkCAT aims to investigate the health and educational outcomes of children with congenital anomalies for the first ten years of their lives. EUROlinkCAT will use the existing EUROCAT infrastructure to support 22 registries in 14 European countries to link their congenital anomaly data to mortality, hospital discharge, prescription and educational databases. We also aim to facilitate the development of a more reciprocal relationship between families with children with congenital anomalies, health and social care professionals and researchers by conducting focus groups and a comprehensive questionnaire for parents.

  • Since January 2007, a nationwide prenatal screening program has been implemented in the Netherlands. The prenatal screening program includes screening for Down-, Edwards-, and Patau syndrome (via NIPT or combined test), and screening for structural anomalies via an anomaly scan around 20 weeks gestation. When the mother has an increased risk, either detected through a screening test or based on family or medical history, prenatal diagnosis is offered through amniocentesis or chorion villus biopsy for genetic aberrations or an advanced ultrasound for structural anomalies. We investigate the sensitivity of the prenatal screening to detect congenital anomalies and which factors can modify this. We also study if the changes in prenatal screening have effect on the timing of detection of congenital anomalies or on the outcome of pregnancy.

Contact

EUROCAT Northern Netherlands
Internal postcode CB52
PO box 30.001
9700 RB Groningen
The Netherlands