Chair:

• Anna Niemeyer (anna.niemeyer@tmf-ev.de) — TMF – Technology and Methods Platform for Networked Medical Research e.V., Berlin, Germany

Co-Chairs:

• Matthijs Sloep (m.sloep@IKNL.NL) — Department of Research and Development, Netherlands Comprehensive Cancer Organization (IKNL), Utrecht, The Netherlands
• Godfrey Fletcher (gfletcher@cfri.ie) —  CEO, Cystic Fibrosis Registry of Ireland, University College Dublin, Dublin, Ireland, and CEO of National & International Skin Registry Solutions, Charles Institute of Dermatology, University College Dublin, Dublin, Ireland

 

EMPARE – EUROPEAN MEDICAL PATIENT REGISTRIES

The EFMI Working Group on Medical Registries – EMPARE – was formally launched on 27 May 2026. It serves as a European forum for advancing the methodological, technical, and organisational development of medical registries, with particular attention to their role in an increasingly interoperable and policy-relevant health data environment and the European Health Data Space.

Background

Medical registries are essential infrastructures for healthcare, research, public health, and regulatory activity because they provide longitudinal, real-world data that can support quality assurance, epidemiology, outcomes research, post-marketing surveillance, and evidence generation in routine care. Across Europe, however, registry landscapes remain highly heterogeneous. Differences in governance, technical architecture, metadata practices, data quality procedures, funding arrangements, and interoperability continue to limit comparability, discoverability, and sustainable re-use. At the same time, the European policy environment is changing rapidly through the European Health Data Space, which creates new expectations regarding metadata, interoperability, lawful secondary use, and trustworthy governance for health data infrastructures. Existing European initiatives, including the rare disease registry ecosystem, demonstrate the value of coordinated metadata frameworks and shared infrastructures, but comparable approaches are still lacking across many registry domains.

Aims and objectives

The Working Group addresses these challenges by promoting knowledge exchange, methodological harmonisation, and practical guidance for registry development and operation. Its objectives include improving the visibility of registry infrastructures across Europe; supporting the adoption of interoperable approaches to metadata, semantics, and technical standards; strengthening governance, ethics, and data stewardship; and documenting sustainable organisational and funding models. A further priority is to support the integration of registries into the evolving European health data landscape in ways that are technically realistic, proportionate, and ethically robust. In this context, emerging interoperability work and related implementation guidance, as well as the use of common data models in federated analytical settings, provides an important reference point for future registry infrastructures.

Contribution and outlook

By bringing together expertise from medical informatics and related disciplines, the Working Group contributes to a more coherent European approach to registry infrastructures. It provides a setting in which practical experience, policy developments, and technical standards can be considered together, enabling registries to become more visible, more interoperable, and more sustainable over time. In doing so, the group supports the translation of broad European policy ambitions into operationally meaningful approaches for registry practice and helps to strengthen the long-term usability of registry data for care, research, and public benefit.

 

If you want to become a member of the EMPARE Working Group, please contact the Chair of the Working Group