The second of a series of interoperability workshops will be organised by the JRC in collaboration with DG Health and Food Safety on 30 November 2016 in Luxembourg. It will focus on the alignment of the European Platform on RD Registration with the European Reference Networks (ERNs) IT Platform and other RD-related (IT) platforms being developed in the framework of European Commission supported projects. It will bring together ERNs Board of Member States, applicant ERN representatives, members of the Advisory Technical Group for the RD Platform, DG SANTE's and RTD's relevant Units and the JRC.
The JRC's Rare Diseases Group in the Health in Society Unit of the JRC is in charge of the development and maintenance of the European Platform on Rare Diseases (RD) Registration through an Administrative Arrangement with DG Health and Food Safety. It aims to cope with the enormous fragmentation of RD registries in the EU (600+) and at providing the necessary support and tools for interoperability between the numerous RD data sources. Data needs to be shared between the large numbers of data providers and data users across Europe. In order to do so, standards have to be established and implemented.
More information will be availaible soon.