The European Commission has launched a new online knowledge-sharing platform to support better diagnosis and treatment of rare diseases.
The European Platform on Rare Diseases Registration will connect and standardise rare disease registry data at European Union (EU) levels.
"Rare diseases present a health challenge where action and collaboration at EU level have 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,” said Vytenis Andriukaitis, Commissioner for Health and Food Safety. “Moreover, the platform will also be useful for the work of European Reference Networks, a real EU success story, allowing them to make use of anonymised information from a large pool of patients and offer better treatment to those in need."
The platform includes a registry infrastructure consisting of the European Directory of Registries, the Central Metadata Repository and a data protection tool that ensures patient data are anonymised.