Rare Disease Day: EU Platform on Rare Diseases Registration to address data fragmentation

The European Commission is launching a new online knowledge-sharing platform to support better diagnosis and treatment for more than 30 million Europeans living with a rare disease.

The European Commission is launching a new online knowledge-sharing platform to support better diagnosis and treatment for more than 30 million Europeans living with a rare disease.

Data on patients with specific conditions is currently held in about 600 separate registries across Europe, and most are managed by individual hospitals, research institutions, pharmaceutical companies or patient advocacy groups, rather than at a national level. The type of data and the purpose for which it is collected varies widely. The new European Platform on Rare Diseases Registration will aggregate this data to support the research that can improve diagnosis and treatment outcomes.

Vytenis Andriukaitis, Commissioner for Health and Food Safety, said: “Rare diseases present a health challenge where action and collaboration at EU level has clear added value. Connected, we are so much greater than the sum of our parts. This new EU Platform on Rare Diseases Registration will address the fragmentation of rare diseases data, promote the interoperability of existing registries and will help to create new ones Moreover, the Platform will also be useful for the work of European Reference Networks, real EU success story, allowing them make use of anonymised information from a large pool of patients and  offer better treatment to those in need.”

The platform will be an important tool for the European Joint Programme on Rare Diseases, which will be made available to researchers, clinicians and patients across the EU.