The National Research Data Infrastructure for Personal Health Data (NFDI4Health) uses Local Data Hubs (LDHs) to manage locally research studies, documents and sensitive personal data to support controlled data sharing. While research data management (RDM) systems facilitate the storage and preparation of data and metadata as well as organizational access, they often lack support for interoperability standards of the application domain. To support the exchange with external registries of research studies, we chose 17 attributes to characterize the most relevant aspects of clinical trials (in the following named “metadata profile”). We implemented the metadata profile in the RDM system FAIRDOM SEEK using core attributes and SEEK’s extended metadata feature and created a mapping conforming to the Health Level 7 Fast Healthcare Interoperability Resources (FHIR) standard version R4. Finally, we implemented a prototype application interface for exports in FHIR-JSON format. We plan to extend the interface to serve central registries and support specific FHIR Implementation Guides from various use cases.
SEEK ID: https://publications.h-its.org/publications/1861
DOI: 10.3233/SHTI240676
Research Groups: Scientific Databases and Visualisation
Publication type: Journal
Journal: Digital Health and Informatics Innovations for Sustainable Health Care Systems
Book Title: Digital Health and Informatics Innovations for Sustainable Health Care Systems
Editors: John Mantas and Arie Hasman and George Demiris and Kaija Saranto and Michael Marschollek and Theodoros N. Arvanitis and Ivana Ognjanović and Arriel Benis and Parisis Gallos and Emmanouil Zoulias and Elisavet Andrikopoulou
Publisher: IOS Press
Citation: Digital Health and Informatics Innovations for Sustainable Health Care Systems,IOS Press
Date Published: 22nd Aug 2024
Registered Mode: by DOI
Views: 279
Created: 26th Aug 2024 at 11:15
Last updated: 26th Aug 2024 at 11:16
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