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The European Platform on Rare Disease Registration has been launched!

The European Platform on Rare Disease Registration has been launched!

2019-03-11
The European Platform on Rare Disease Registration has been launched!

Information about rare disease patients is spread in hundreds of registries across Europe. The EU Rare Disease Platform will make registries' data searchable at EU level and promote the standardization of data sharing.

In the EU about 30 million citizens in Europe are affected by more than 6000 different rare diseases (RD). Based on the characteristics of these disorders, no single institution and in most cases no single Member State has enough patients to conduct meaningful studies, thus requiring a European approach. However, the lack of uniform standards for data collection has led to the implementation of a large number of patients’ registries through different approaches between hundreds of registries across Europe, at national, regional and local levels.

In this context, the EU Rare Disease Platformdeveloped by the Commission's Joint Research Centre in collaboration with the Directorate General for Health and Food Safety, aims to provide researchers, healthcare providers, patients and policy-makers with a consistent instrument to improve knowledge, diagnosis and treatment of RD. It will make registries' data searchable at EU level and will standardise data collection and data exchange; which will increase the value of each registry and its registration while supporting existing registries and the creation of new ones. Studies and research will also be facilitated and the Platform will support the work of the European Reference Networks, which were founded on the principle that knowledge should travel, not the patients.

The platform was launched at the occasion of Rare Disease Day on February 28. Taking advantage of the release, Simona Martin, Scientific Officer at the European Commission Joint Research Centre, Directorate F – Health, Consumers and Reference Materials, have provided an interview answering key questions on the platform aims and expected outcomes. According to Ms. Martin, "the Joint Research Centre and the Directorate General for Health and Food Safety will continue to work to improve the recognition and visibility of rare diseases, support policies in the Member States and develop cooperation and coordination for rare diseases at EU level. The Platform is a huge step forward. We know it is going to be a valuable resource and will help improve the lives of rare disease patients." 

Full interview is available at the Health-EU newsletter 231 - Focus: Connecting the dots to get a clearer picture: the European Platform on Rare Disease Registration