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Joint Action EUROCAT 2011-2013

Funded by the Public Health Programme  2008-2013

of the European Commission


To support the implementation of the Council Recommendation of 8 June 2009 on an action in the field of rare diseases, and the Communication from the Commission on Rare Diseases: Europe’s challenges of November 2008,  the European Commission (EU) is funding a series of Joint Actions in the field of rare diseases. Congenital anomalies have been identified as one of the major groups of mainly rare diseases in need of concerted action across Europe.


EUROCAT Joint Action combines funding of the EU and member states (MS) in order to secure a sustainable, high quality and easily accessible information system on congenital anomalies for almost one third of the European birth population. Pooling of expertise, improving of coding and classification, surveillance, evaluation of clusters, and identification of possibilities for primary prevention are some of the goals of this Joint Action.  The results of the EUROCAT Joint Action 2011-2013 are expected to have an important impact on future MS policy on rare diseases.


Joint Action Associated Partners [Table] 



Joint Action Collaborating Partners [Table]



Joint Action Workpackages [Table




Joint Action Evaluation Report















The principal expected outcomes of the

EUROCAT Joint Action 2011-2013






Evaluation of the public health impact of congenital anomalies (CA)is enabled by easily accessible and updated epidemiological information on the EUROCAT website (www.eurocat-network.eu). The website provides data on prevalence and specific public health indicators for CA such as perinatal mortality, prenatal detection rates and termination of pregnancies due to severe CA, Down syndrome live birth prevalence,  total prevalence of NTD and  CA paediatric surgery.




The detection, appropriate investigation and reporting of clusters and trends in congenital anomaly prevalence, including improving the capacity for rapid response through a newly established Task Force for Evaluation of Clusters in situations demanding immediate actions



Assessment of the teratogenic impact of new or changing environmental exposures, including swine flu related exposures and maternal chronic diseases such as mental depression, obesity, epilepsy, diabetes and asthma.




Evaluation of the potential for linkage between databases and electronic information systems on exposure, including European environmental pollution information systems and drug prescription databases in order to enable Europe-wide surveillance and etiological analyses of congenital anomaly risk in relation to such exposures
5. Establishing  strategic framework for primary prevention of CA to be implemented in the national plans for rare diseases 



Evaluation of progress in the prevention of neural tube defects in Europe by raising periconceptional folic acid status in women of childbearing age



Evaluation of impact of delayed childbearing and changes in prenatal screening techniques and policy on Down Syndrome in Europe
8. Contribute to the development   of pharmacovigilance system in Europe (EUROmediCAT).



Improved coding and classification of CA by training in coding and contribution of EUROCAT expertise to the revision of the International Classification of Disease.
10. The addition of new registries to the network, and provision of guidelines and software to further interested regions/countries.




Organisation of two European Symposia on the Prevention of Congenital Anomalies in order to bring together public health professionals, clinicians, scientists, patient organisations and governmental agencies  and  share the latest scientific and clinical results on the monitoring and prevention of congenital anomalies.



Members of Project Management Committee


Steering Committee of Elected Registry Leaders

Workpackage leaders

Project Leader

Professor Helen Dolk, University of Ulster, UK [Contact Details]

Project Manager
Dr Rhonda Curran, University of Ulster, UK [Contact Details]

Useful Links
Map of Registries [Map]

Joint Action Promotional Leaflet [Leaflet]
EUROCAT Website Epidemiological Data Leaflet [Leaflet]
Executive Agency for Health & Consumers Joint Action Brochure 2008-2011 [Brochure]


Members of Website Dissemination Committee


Associated Workpackages: WP1 and WP2

Committee Objectives: to improve the existing version of the EUROCAT webpage, to discuss changes, to co-ordinate the process and prepare final version for presentation at PMC meetings



Members of Coding and Classification  Committee

Associated Workpackages: WP5

Committee Objectives: to improve coding and classification on congenital anomalies in Europe/EUROCAT and to ensure uniform coding of congenital anomalies in Europe/EUROCAT

Taskforce for Evaluation of Clusters

Committee Objectives: