Advancing ERN Registries: Insights from the ERICA & c4c Joint Workshop
Posted on 7 February 2025 in News
The Joint Workshop of ERICA and c4c (conect 4 children) took place on 4–5 February 2025 at the Marsilius Kolleg of Heidelberg University Hospital.
The workshop focused on “Exploring and Enhancing the Potential for ERN Registries to Advance Research in Rare and Paediatric Conditions” and was attended by Lotte Boormans, ERN eUROGEN Registry Manager, and Loes van der Zanden, ERN eUROGEN Registry Coordinator.
The agenda was packed with key discussions, including:
- European Rare Diseases Research Alliance (ERDERA) and the opportunities it provides (joint transnational calls, networking support schemes, and support in connecting to the Virtual Platform, making data FAIR, and enabling data sharing and analysis).
- The introduction of the new ORPHA codes for undiagnosed patients.
- SAMS, a symptom-annotation tool.
- Automatic data extraction from Electronic Health Records.
- Opportunities for European Reference Network (ERN) registries to collaborate with industry.
- The upcoming European Health Data Space and its implications for ERN registries.
