Publications

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 …s. 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.

To support federated data structuring and sharing for sensitive health data from clinical trial, epidemiological and public health studies in the context of the German National Research Data Infrastructure … for Personal Health Data (NFDI4Health), we have developed Local Data Hubs (LDHs) based on the FAIRDOM-SEEK platform. Those LDHs connect to the German Central Health Study Hub (CSH) to make the health data searchable and findable. This decentralised approach supports researchers to make health studies with their data FAIR (Findable, Accessible, Interoperable and Reusable), and at the same time fully preserves data protection for sensitive data.

Research projects such as the international COVID-19 Disease Map initiative and the German COVID-19 study hub of NFDI are supported by de.NBI-SysBio tools and services in organizing and sharing research … data ’FAIRly‘. This is done via the data management platform FAIRDOMHub/SEEK which is quickly adapted to the users' needs. COVID-19 related literature is manually curated and used for basic research about the curation process of SABIO-RK to provide the research community with high quality kinetics data.