EUROCAT-Surveillance of Congenital Anomalies in Europe

Duration

2011-2013

Coordinator

University of Ulster, Prof. Helen Dolk

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 DGSanco’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-EU 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), 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.