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National Research Data Infrastructure for Personal Health Data (NFDI4Health) is a german national project that deals with data generated in clinical trials, epidemiological and public health studies. It aims to foster the fulfillment of the FAIR principles requirements and collaboration between these communities. The mission of NFDI4Health is to provide new opportunities for the scientific use of personal health data while respecting privacy requirements.Based on the FAIR principles, services are provided to researchers to permanently store, semantically enrich and share data in interoperable form and to merge data from different sources.
For more information about the project, visit www.nfdi4health.de/en/
NFDI4Health developed a metadata schema (MDS) based on several international standards and studies' registries to collect metadata from clinical, epidemiological and Public Health studies, and associated resources.
The MDS is composed of a generic, core module and further specialized modules to describe the design of certain resources or for specific use cases.
At this stage we provide the following versions of the MDS in ART-DECOR:
Version 3.0 (Published)
Version 3.3 (Published)
Publisso
Simplifier
Graphical Representation
Data harmonisation and publication - NFDI4Health
The NFDI4Health metadata schema (NFDI4Health-MDS) is an information model tailored to describe design elements and context of clinical, epidemiological, and public health studies as well as associated resources such as documents (e.g., study protocol, instruments) or datasets. The NFDI4Health-MDS improves the FAIRness of the cataloged studies and associated resources by making the content searchable and accessible through dedicated centralized search portals such as the German Central Health Study Hub (https://csh.nfdi4health.de/), as well as locally through systems such as NFDI4Health Local Data Hubs (https://www.nfdi4health.de/en/service/local-data-hub.html).
To ensure a broad applicability, the NFDI4Health-MDS combines common elements from reference data models and their controlled vocabularies (value sets). It is modular in design to allow the description of studies from different domains with their specific metadata requirements. In addition to a common core module, the NFDI4Health-MDS contains modules that are specific to certain scientific domains, such as nutritional epidemiology, or for the description of chronic diseases. These modules were developed based on input from subject matter experts involved in NFDI4Health use cases. The metadata model is constantly expanded based on the needs of the user community.
This work serves as base for the NFDI4Health-MDS Simplifier Project.
Content in ART-DECOR:
Haitham Abaza, Heidelberg Institute for Theoretical Studies (HITS)
Paula J. Mayer, Berlin Institute of Health at Charité, Universitätsmedizin Berlin
Carina N. Vorisek, Berlin Institute of Health at Charité, Universitätsmedizin Berlin
NFDI4Health Subgroup "Metadata schema and standard mapping" of NFDI4Health and of the NFDI4Health Task Force COVID-19:
Aliaksandra Shutsko, ZB MED – Information Centre for Life Sciences, Cologne
Martin Golebiewski, Heidelberg Institute for Theoretical Studies (HITS)
Sophie A. I. Klopfenstein, Berlin Institute of Health (BIH) at Charité, Universitätsmedizin Berlin
Carsten Oliver Schmidt, University Medicine Greifswald
With contributions from:
Claudia Brünings-Kuppe, Leibniz Institute for Prevention Research and Epidemiology (BIPS), Bremen
Vera Clemens, ZB MED – Information Centre for Life Sciences, Cologne
Johannes Darms, ZB MED – Information Centre for Life Sciences, Cologne
Sabine Hanß, University Medicine Göttingen
Timm Intemann, Leibniz Institute for Prevention Research and Epidemiology (BIPS), Bremen
Franziska Jannasch, German Institute of Human Nutrition (DIfE), Potsdam-Rehbrücke
Elisa Kasbohm, University Medicine Greifswald
Birte Lindstädt, ZB MED – Information Centre for Life Sciences, Cologne
Matthias Löbe, University Leipzig
Ester Orban, coverCHILD
Ines Perrar, University of Bonn
Manuela Peters, Leibniz Institute for Prevention Research and Epidemiology (BIPS), Bremen
Ulrich Sax, University Medicine Göttingen
Matthias Schulze, German Institute of Human Nutrition (DIfE), Potsdam-Rehbrücke
Claudia Schupp, coverCHILD
Florian Schwarz, German Institute of Human Nutrition (DIfE), Potsdam-Rehbrücke
Carolina Schwedhelm, MDC-Berlin
Stefan Strathmann, Georg-August-Universität Göttingen
Dagmar Waltemath, University Medicine Greifswald
Hannes Wünsche, Robert Koch Institute (RKI), Berlin
Atinkut A. Zeleke, University Medicine Greifswald
This work was done as part of the NFDI4Health Task Force COVID-19 and NFDI4Health National Research Data Infrastructure for Personal Health Data (www.nfdi4health.de). We gratefully acknowledge the financial support of the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation) – Project Numbers 451265285 and 442326535.
Finalized v3.3 of the NFDI4Health Metadata Schema
Note: Items with data types url, uri, and integer in Excel v3.3 have been represented here as string, string, and quantity respectively. This is due to the lack of these data types in ART-DECOR. However, for these items, the original data type as indicated in Excel v3.3 was added in a comment.
Finalized v3.0 of the NFDI4Health Metadata Schema