NFDI4Health Local Data Hubs Implementing a Tailored Metadata Schema for Health Data

Abstract:
        Introduction: NFDI4Health is a consortium funded by the German Research Foundation to make structured health data findable and accessible internationally according to the FAIR principles. Its goal is bringing data users and Data Holding Organizations (DHOs) together. It mainly considers DHOs conducting epidemiological and public health studies or clinical trials. Methods: Local data hubs (LDH) are provided for such DHOs to connect decentralized local research data management within their organizations with the option of publishing shareable metadata via centralized NFDI4Health services such as the German central Health Study Hub. The LDH platform is based on FAIRDOM SEEK and provides a complete and flexible, locally controlled data and information management platform for health research data. A tailored NFDI4Health metadata schema for studies and their corresponding resources has been developed which is fully supported by the LDH software, e.g. for metadata transfer to other NFDI4Health services. Results: The SEEK platform has been technically enhanced to support extended metadata structures tailored to the needs of the user communities in addition to the existing metadata structuring of SEEK. Conclusion: With the LDH and the MDS, the NFDI4Health provides all DHOs with a standardized and free and open source research data management platform for the FAIR exchange of structured health data.

SEEK ID: https://publications.h-its.org/publications/1869

DOI: 10.3233/shti240845

Research Groups: Scientific Databases and Visualisation

Publication type: InProceedings

Journal: German Medical Data Sciences 2024

Book Title: German Medical Data Sciences 2024

Editors: Rainer Röhrig and Niels Grabe and Ursula Hertha Hübner and Klaus Jung and Ulrich Sax and Carsten Oliver Schmidt and Martin Sedlmayr and Antonia Zapf

Publisher: IOS Press

Citation: German Medical Data Sciences 2024,IOS Press

Date Published: 30th Aug 2024

Registered Mode: by DOI

Authors: Xiaoming Hu, Haitham Abaza, Rene Hänsel, Masoud Abedi, Martin Golebiewski, Wolfgang Müller, Frank Meineke

Citation
Hu, X., Abaza, H., Hänsel, R., Abedi, M., Golebiewski, M., Müller, W., & Meineke, F. (2024). NFDI4Health Local Data Hubs Implementing a Tailored Metadata Schema for Health Data. In Studies in Health Technology and Informatics. IOS Press. https://doi.org/10.3233/shti240845
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Created: 7th Oct 2024 at 12:32

Last updated: 7th Oct 2024 at 12:32

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