Project Information

NFDI4Health

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/

Description of the NFDI4Health Metadata Schema (NFDI4Health-MDS)

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, "general" module and further specialized modules to describe the design of certain resources or for specific use cases.
The general module contains elements:

• that can be used for all kinds of resources, such as studies, documents or questionnaires

• that are specific to studies only.

Aim of the NFDI4Health-MDS

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.

Authors (with affiliations) of the NFDI4Health-MDS:

• Aliaksandra Shutsko, ZB MED – Information Centre for Life Sciences

• Carsten Oliver Schmidt, University Greifswald

• Sophie Anne Ines Klopfenstein, Berlin Institute of Health at Charité, Universitätsmedizin Berlin

• Johannes Darms, ZB MED – Information Centre for Life Sciences

• Martin Golebiewski, Heidelberg Institute for Theoretical Studies

• Carina Nina Vorisek, Berlin Institute of Health at Charité, Universitätsmedizin Berlin

• Haitham Abaza, Heidelberg Institute for Theoretical Studies

With contributions from:

• Matthias Schulze

• Franziska Jannasch

• Carolina Schwedhelm

• Tobias Pischon

• Hajo Zeeb

• Katharina Nimptsch

Authors and Contact Persons of the ART-DECOR Project

• Haitham Abaza

• Paula Josephine Mayer

• Carina N. Vorisek

Acknowledgments

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.

License

CC-BY-4.0 - Creative Commons Attribution 4.0 International.

Additional project information

Properties Prefix: nfdhtfcov19-Default language: en-US Publication location Project overview https://nfdi4health.art-decor.pub Project index Disclaimer The content of this publication has been carefully prepared and reviewed. However, BIH @ Charité and NFDI4Health does not guarantee the accuracy, completeness or quality of the information provided, or that it is up-to-date. Liability claims against BIH @ Charité and NFDI4Health in respect of material or immaterial damage caused by the use or non-use of the information offered or by inaccurate or incomplete information are in principle ruled out provided that there is no provable culpable intent or gross negligence on the institute’s part. List of Authors Kai Heitmann Sophie Klopfenstein Alonso Essenwanger Felix Jorczik Carina Vorisek Prof. Dr. Sylvia Thun Atinkut Alamirrew Zeleke Thimo Hölter Johannes Darms Haitham Abaza Paula Josephine Mayer

Version Info

Date By Description 2023‑11‑06 20:39:52 Kai Heitmann Official Release: v3.0 Finalized v3.0 of the NFDI4Health Metadata Schema 2022‑03‑09 21:16:45 kai Project created