European Health Data Space (EHDS)

Last year saw the inception of the ECFSPR EHDS Focus Group; a small active group of ECFSPR members representing the countries within the EU. The group is tasked with proactively seeking out experts in the EHDS framework, regulation, pilot projects and timelines. Additionally, they are identifying individuals and groups with knowledge or experience in the various subgroups, pilots, implementation phases, policy development, mapping and writing EU Dataset Catalogues. The objective is to gain an understanding of the impact EHDS will have on consent and the roles and obligations of both the national registries sitting within the EU and the ECFSPR. The ECFSPR EHDS Focus Group is committed to sharing our combined knowledge and experience through meetings and our webinar series.

The first webinar in the series is titled, Roles and Obligations of National and Multi-Country (Rare Disease) Registries in the EHDS.

This is an exciting opportunity to hear directly from the European Commission as the two invited speakers, Mélodie Bernaux and Owe Langfeldt, present their perspective, followed by a panel discussion with representatives from the ECFSPR EHDS-Focus Group. The objective is to move beyond the basics previously discussed and to share the information obtained from the European Commission directly with our members. Equally, the CF registries aim to increase their visibility and share their needs, challenges and concerns with the European Commission as we determine our role within the EHDS. The unique ECFSPR data flow highlighted in the webinar provides the European Commission with some context. Ultimately, we need to ensure we are a part of the process as the EHDS develops.