Implementation Guide of the NFDI4Health Metadata Schema (MDS) Version 3.3
Overview
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.
Graphical Representation of the MDS Version 3.3
For more information about the project, visit www.nfdi4health.de/en/
Aim of the 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.
NFDI4Health' MDS-to-FHIR Implementation Guide
This is the Implementation Guide of the NFDI4Health-MDS-to-FHIR project conducted during the NFDI4Health project and led by the Core Facility Digital Medicine and Interoperability of the Berlin Institute of Health (BIH) at Charité – Universitätsmedizin Berlin.
This FHIR specification is based on the NFDI4Health-MDS Version 3.3 (release year 2023 - DOI: 10.4126/FRL01-006472531) which is publicly accessible on Publisso and ART-DECOR.
Impressum
This IG was created as part of the NFDI4Health project.
Contact Persons
- Sophie A. I. Klopfenstein, Berlin Institute of Health (BIH) at Charité – Universitätsmedizin Berlin
- Carina N. Vorisek, Berlin Institute of Health (BIH) at Charité – Universitätsmedizin Berlin
- Sylvia Thun, Berlin Institute of Health (BIH) at Charité – Universitätsmedizin Berlin
If you have any questions about the Implementation Guide, you may ask them at chat.fhir.org in the stream "NFDI4Health-MDS".
You can comment this publication by creating issues in the simplifier project.
Authors of the Implementation Guide (alphabetical order):
- Thimo A. Hölter
- Sophie A. I. Klopfenstein
- Julian Sass
- Carina N. Vorisek
- NFDI4Health MDS Group
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.
Copyright
The content of this specification is public. The rights of subsequent use or publication are not restricted. For rights of use of the underlying FHIR technology, see the FHIR Base Specification. Some code systems used are published and maintained by other organizations. The copyright of the organizations listed there applies.
Disclaimer
The contents of this document are public. It should be noted that parts of this document are based on FHIR Version R4, which is copyrighted by HL7 International.
Although this publication has been prepared with the utmost care, the authors cannot accept any liability for direct or indirect damage that may arise from the contents of this specification.