On 3 May 2022, the European Commission has launched the European Health Data Space (EHDS). The EHDS will notably enhance access and use of health data for research, innovation, public health, and policy-making, including the field of rare diseases. It is hoped that the access to high quality and larger amount of data across EU Member States will facilitate the development of treatments for rare diseases; a field where information and data is key for research and therapy progress. Health data access bodies will be connected to the new decentralised EU-infrastructure for secondary use (HealthData@EU) which will be set up to support cross-border projects. In this regard, TEHDAS has identified the technical services needed for the EHDS in a new report. The report identifies basic software items for the exchange of data in the EU and includes four steps for the user to access health data, including data discovery, data permit application, data use and project finalisation.
(source: OrphaNews 13 May 2022)