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On 13 and 14 May 2025, the first General Assembly of the Network for University Medicine (NUM) Study Network and the Specialist Network on Infections was held in Frankfurt am Main. Ulrich Sax and Johannes Darms from NFDI4Health led the workshop “DIZe, FDPG, NUKLEUS, NUM Research Portal, NUM Hub – How Do the Processes Fit Together?” together with Marie Gebhardt, Martin Sedlmayr, Dagmar Krefting, and Markus Brechtle. The aim was to provide a structured overview of the landscape of German health data infrastructures and to explore how various types of studies and data can be situated within the infrastructures of the NUM Study Network, the KKSN, the Medical Informatics Initiative (MII), and NFDI4Health. The spectrum ranged from epidemiological observational studies to regulated clinical trials of Phase II and III.
A particular focus was placed on the application of the FAIR principles. In the discussion, participants reflected on how research data can be made findable, under what conditions access to these data can be enabled, the extent to which interoperability barriers remain, and how institutions can make their data available for effective reuse. Throughout the workshop, it became clear that the participants take on different but complementary roles within the research data ecosystem. These range from initiators of clinical studies and data holders who manage verified datasets to providers of portals that facilitate access to study information. Researchers with specific data needs as well as technical service providers, who offer secure environments for data processing, were also represented.
A key outcome was the shared understanding of the term “study portal.” This term encompasses both the provision of information and tools to support the development of clinical studies, as pursued by the NUM Study Network, and low-barrier access to studies, study forms, and contact details, as realised in the Health Study Hub by NFDI4Health. The discussion led to the goal of continuing the exchange based on the shared understanding of processes and expanding coordination with regard to future requirements in the European context.
