EU seeks to boost rare-disease R&D with data protection system

New tool will allow researchers to use data to improve treatments without revealing patient identities

The EU has launched a digital identity protection system for rare-disease researchers to use data to improve treatments while upholding the privacy rights of patients.

The system was developed by the European Commission’s science service, the Joint Research Centre. Announcing it on 20 May, the JRC said that more than 30 million Europeans live with a rare disease, that their clinical data are fragmented across hundreds of registries on the continent, and that these data are therefore often difficult to find.