{"id":24276,"date":"2019-08-30T00:30:13","date_gmt":"2019-08-29T22:30:13","guid":{"rendered":"https:\/\/www.cde.ual.es\/?p=24276"},"modified":"2019-08-30T00:02:07","modified_gmt":"2019-08-29T22:02:07","slug":"3rd-health-programme-rare-disease-registries-for-the-european-reference-networks","status":"publish","type":"post","link":"https:\/\/www.cde.ual.es\/en\/3rd-health-programme-rare-disease-registries-for-the-european-reference-networks\/","title":{"rendered":"3rd Health Programme: Rare disease registries for the European Reference Networks"},"content":{"rendered":"

This call (PJ-01-2019), which aims to support the development of rare disease (RD) registries for European Reference Networks (ERNs), belongs to the 3rd Health Programme.<\/strong><\/em>
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Patient registers and databases are key instruments for developing clinical research in the field of rare diseases, for improving patient care and health planning. They are the best way to pool data to achieve a sufficient sample size for epidemiological and\/or clinical research. The registries serve as a recruitment tool for the launch of studies focusing on disease aetiology, pathogenesis, diagnosis or therapy.<\/p>\n

The Council of the European Union recommended that, in the field of rare diseases, Member States consider supporting, at all appropriate levels, including the EU, for epidemiological purposes, registries and databases, while being aware of the existence of independent governance. To support this process and, in particular, the interoperability of data in rare disease registries, the Commission decided to create a European Platform for Rare Disease Registries (European Platform for Rare Diseases) and to develop specific standards for the interoperability of such rare disease registries (“JRC standards” developed by the Commission’s Joint Research Centre).<\/p>\n

Objectives<\/h2>\n

The main objectives of this call for projects for rural development registers for RNAs are:<\/p>\n