Connecting Biomedical Research Data: The NFDI BioMed Interest Group's Approach to Metadata Interoperability

Poster P290 presented at the annual meeting of the German Society of Nephrology (DGfN 2026), category Interdisziplinäre Nephrologie. Abstract The European Health Data Space (EHDS) Regulation, which entered into force in March 2025, will fundamentally reshape how university hospitals and clinical research institutions across Europe manage and share health data. With key implementing acts and technical requirements already on the horizon, institutions face mounting pressure to align with EHDS standards for interoperability and FAIR data - including mandated frameworks such as HealthDCAT-AP and HL7 FHIR. In Germany, the National Research Data Infrastructure (NFDI) provides an existing framework of research consortia working to build FAIR and sustainable data management across disciplines. Within this framework, the NFDI BioMed Interest Group unites five consortia - GHGA, NFDI4BIOIMAGE, NFDI4Health, NFDI4Immuno, and NFDI4Microbiota - spanning genomics, imaging, immunology, microbiome, and clinical research, and is actively working to align with the technical requirements set by the EHDS. A central challenge is heterogeneity: each research community address its own specific questions and approaches which is also reflected in the metadata schemas, terminologies, and regulatory requirements. It is currently not possible to discover data from a unified entry points, meaning each consortium needs to implement EHDS requirements on behalf of their communities. To address unify the process for all relevant consortia, the NFDI BioMed Interest Group held dedicated workshops in Heidelberg (2024) and Cologne (2025), establishing a shared understanding of current practices and developing a joint metadata interoperability roadmap. Rather than enforcing deep semantic alignment across all data variables, the roadmap focuses on harmonising discovery-level metadata describing study characteristics - the prerequisite for all subsequent mapping phases. The group is currently defining a minimal common metadata set for cross-consortia discovery, aligned with HealthDCAT-AP and HL7 FHIR. This provides a compliance pathway for consortia within EHDS scope while allowing individual communities to retain the flexibility of their domain-specific schemas. This infrastructure offers a practical pathway to find and combine immunological, genomic, imaging, and clinical datasets held across different national repositories, without requiring centralisation of sensitive patient data. The framework also positions the NFDI BioMed Interest Group within the broader European data landscape, including the European Open Science Cloud (EOSC), supporting data-driven nephrology research at a European scale. NFDI4Immuno is funded by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation), project number 501875662.

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Zenodo (CERN European Organization for Nuclear Research)
Published
2026-10-13
DOI
https://doi.org/10.5281/zenodo.23331349
Primary Topic
Research Data Management Practices
Type
article
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article

Connecting Biomedical Research Data: The NFDI BioMed Interest Group's Approach to Metadata Interoperability

Ulrik Stervbo, Nina Babel, Christian E. Busse, Timm Henning Westhoff et al.
Zenodo (CERN European Organization for Nuclear Research)
Research Data Management Practices
article

Connecting Biomedical Research Data: The NFDI BioMed Interest Group's Approach to Metadata Interoperability

Ulrik Stervbo, Nina Babel, Christian E. Busse, Timm Henning Westhoff, Kamil Sebastian Rosiewicz, Moritz Anft
article en

Abstract

Poster P290 presented at the annual meeting of the German Society of Nephrology (DGfN 2026), category Interdisziplinäre Nephrologie. Abstract The European Health Data Space (EHDS) Regulation, which entered into force in March 2025, will fundamentally reshape how university hospitals and clinical research institutions across Europe manage and share health data. With key implementing acts and technical requirements already on the horizon, institutions face mounting pressure to align with EHDS standards for interoperability and FAIR data - including mandated frameworks such as HealthDCAT-AP and HL7 FHIR. In Germany, the National Research Data Infrastructure (NFDI) provides an existing framework of research consortia working to build FAIR and sustainable data management across disciplines. Within this framework, the NFDI BioMed Interest Group unites five consortia - GHGA, NFDI4BIOIMAGE, NFDI4Health, NFDI4Immuno, and NFDI4Microbiota - spanning genomics, imaging, immunology, microbiome, and clinical research, and is actively working to align with the technical requirements set by the EHDS. A central challenge is heterogeneity: each research community address its own specific questions and approaches which is also reflected in the metadata schemas, terminologies, and regulatory requirements. It is currently not possible to discover data from a unified entry points, meaning each consortium needs to implement EHDS requirements on behalf of their communities. To address unify the process for all relevant consortia, the NFDI BioMed Interest Group held dedicated workshops in Heidelberg (2024) and Cologne (2025), establishing a shared understanding of current practices and developing a joint metadata interoperability roadmap. Rather than enforcing deep semantic alignment across all data variables, the roadmap focuses on harmonising discovery-level metadata describing study characteristics - the prerequisite for all subsequent mapping phases. The group is currently defining a minimal common metadata set for cross-consortia discovery, aligned with HealthDCAT-AP and HL7 FHIR. This provides a compliance pathway for consortia within EHDS scope while allowing individual communities to retain the flexibility of their domain-specific schemas. This infrastructure offers a practical pathway to find and combine immunological, genomic, imaging, and clinical datasets held across different national repositories, without requiring centralisation of sensitive patient data. The framework also positions the NFDI BioMed Interest Group within the broader European data landscape, including the European Open Science Cloud (EOSC), supporting data-driven nephrology research at a European scale. NFDI4Immuno is funded by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation), project number 501875662.

Zenodo (CERN European Organization for Nuclear Research)
German Cancer Research Center (DE), Universitätsklinik Marien Hospital Herne (DE), Berlin Institute of Health at Charité - Universitätsmedizin Berlin (DE)
Openalex Percentile: Top 6%
Research Data Management Practices
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