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Transfer of the central database and coordinating activities of EUROCAT to the JRC

Abstract: 
In the framework of implementing European Commission's strategy in the field of rare diseases, the Directorate-General Joint Research Centre (DG JRC) and the Directorate-General for Health and Food Safety (DG SANTE) signed in December 2013 the Administrative Arrangement (AA) on the "Development and Maintenance of the European Platform on Rare Diseases Registration". One objective of the AA is the transfer of the European-level coordination activities of EUROCAT to the JRC. EUROCAT is a network of 55 population-based registries in 33 countries acting in the epidemiological surveillance of congenital anomalies. It covers 1/3 of the European birth population which corresponds to more than 1.7 million births/year. The EUROCAT central database contains half a million cases of children with congenital anomalies. This data enables provision of prevalence, prenatal diagnosis and perinatal mortality data, detection of teratogenic exposures among others. It develops recommendations considered for primary prevention in the Rare Diseases National Plans for medicinal drugs, food/nutrition, lifestyle, health services, environmental pollution. These results are highly relevant for European public health and may require public health action. In order to offer a sustainable solution for the continuation of EUROCAT activities, to secure the results of former work and to keep the system functioning, it was agreed that EUROCAT becomes part of the European Platform on Rare Diseases Registration, since the diseases/conditions the network is dealing with belong to the category 'rare'. This report presents the preparation phase, the negotiations and the procedures carried out for the effective transfer of the EUROCAT Central Registry including the central database and the coordinating activities to the JRC. The different types of activities and the involvement of different services (legal, IT, information security, procurement) in a concerted action are detailed. The establishment of the new JRC-EUROCAT Central Registry (CR) located at the JRC, Directorate F – Health, Consumers and Reference Materials, Health in Society Unit (former Institute for Health and Consumers Protection, Public Health Policy Support Unit) since 1st of January 2015 corresponds to the "data repository" function of the Rare Diseases Platform. The CR activities including collection of data from the registries, data management, communication with the registries, production of dissemination materials, management of the website are described. In addition, the role and functioning of the new joint JRC-EUROCAT Management Committee and JRC's role in supporting also other activities of the network (meetings of Registry Leaders, Coding Committee, Working Groups, etc.) are presented. The accomplishment of the transfer is a milestone in the development of the European Platform on Rare Diseases Registration.