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European Surveillance of Congenital Anomalies [EUROCAT] [20102204] - Joint Actions
General objectives

To facilitate the reduction of the public health burden of congenital anomalies (CA) by epidemiological surveillance through the EUROCAT network of population-based congenital anomaly registers.

Strategic relevance and contribution to the public health programme

Congenital anomalies are a major group of mainly rare diseases where concerted action across Europe has been identified as a priority in the Council Recommendation of 8 June 2009 on an action in the field of rare diseases, and in the Communication from the Commission on Rare Diseases: Europe’s challenges of November 2008. These recognise the need for registries and databases co-ordinated at a European level, for pooling of expertise at European level, for improving the coding and classification of rare diseases, for comparable epidemiological data at EU level, and for identifying the possibilities for primary preventive measures – all these areas being central to EUROCAT’s activities. Moreover, they emphasise the need for sustainability of successful European networks in these areas.

Methods and means

The EUROCAT network has been in existence since 1979, in the last ten years co-funded by DG Sanco`s Rare Diseases and Public Health Programmes. 1.5 million births per year, comprising 28% of births in the European Union as well as some non-European countries, are covered by 38 Registries in 21 countries. Cases of congenital anomaly among livebirths, stillbirths and terminations of pregnancy following prenatal diagnosis, are registered using multiple sources of information. A standard anonymised dataset is transmitted by each member Registry, using common software, to a central database at EUROCAT Central Registry, and subject to data quality validation. The Central Registry ensures the provision of updated prevalence and related data on the EUROCAT website in a user-driven interactive table generation format (www.eurocat-network.eu). It further conducts statistical monitoring for trends and clusters, and will provide data and assistance to the other workpackages to answer a variety of questions pertinent to prevalence, prevention and prenatal screening.

Expected outcomes period

1. Available and accessible epidemiological info updated to 2011 on prevalence of CA, perinatal mortality due to CA, and prenatal detection rates, on EUROCAT website
2.The detection, investigation and reporting of clusters and trends in CA prevalence
3. Assessment of teratogenic impact of new or changing environmental exposures, including swine flu related exposures as well as maternal chronic diseases
4. Evaluation of potential for linkage between registers and e-info systems on exposure
5. A framework for national plans for primary prevention of CA, and evaluation of progress in the prevention of neural tube defects by raising periconceptional folic acid status
6. Evaluation of impact of delayed childbearing and changes in prenatal screening techniques as well as policies on Down Syndrome
7. The development of EUROCAT`s role as core pregnancy-related pharmacovigilance system in Europe (EUROmediCAT)
8. The addition of at least 3 new registries to network, inc 2 new EU countries, the provision of guidelines and related software to interested regions/countries
9. Improved coding and classification of CA
10. Two European Symposia on Prevention of CA

Details
Start date: 01/01/2011
End date: 01/01/2014
Duration: 36 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 1 106 302,00
Portfolio: Rare diseases