TY - JOUR T1 - National registries of rare diseases in Europe: an overview of the current situation and experiences. JF - Public Health Genomics Y1 - 2015 A1 - Domenica Taruscio A1 - Luciano Vittozzi A1 - Remy Choquet A1 - Ketil Heimdal A1 - Georgi Iskrov A1 - Yllka Kodra A1 - Paul Landais A1 - Manuel Posada A1 - Rumen Stefanov A1 - Christiane Steinmueller A1 - Elfriede Swinnen A1 - Herman Van Oyen KW - Databases, Factual KW - Delivery of Health Care KW - Europe KW - European Union KW - Humans KW - International Cooperation KW - Organizational Objectives KW - Rare diseases KW - REGISTRIES AB -

The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU.

VL - 18 CP - 1 M3 - 10.1159/000365897 ER -