Get-together at the Berlin Registry Days

Under the motto „Registries - perspectives for better data use“, experts from academia, politics, industry and patient organisations came together on 13 and 14 May 2025, to debate the future of the registry landscape in Germany and Europe and to reflect on the benefits, opportunities and obstacles of registry-based research. 

The event underlined the importance of registries as key building blocks within the health data ecosystembecause they are structured, high-quality and curated data that, against the backdrop of digitalisation, hold great potential for both science and healthcare.

A particular focus of the conference is on how registries can become a central component of a networked health data ecosystem in line with European developments such as the European Health Data Space (EHDS). To this end, national and European framework conditions need to be set in such a way that sustainable, networked health research can be created, registries can be connected and their data can be used more securely and usefully. This is to be achieved, among other things, through the Register Act set out in the coalition agreement.

© Michéle Zoch

Our colleagues Dr. Eveline Prochaska, Head of the Interoperability research unit, and Michéle Zoch, Head of the Rare Diseases focus area, took part in the Registry Days, which were characterised by exchange, discussion, new impulses and diverse perspectives. In particular, Michéle Zoch took the opportunity at the event for a get-together with the core team of the National Register for Rare Diseases (NARSE), which is made up of experts from Dresden, Berlin and Frankfurt.