Article
NFDI4Health Local Data Hubs Implementing a Tailored Metadata Schema for Health Data
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Authors
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Xiaoming Hu
- Heidelberger Institut für Theoretische Studien gGmbH, Heidelberg, Germany
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Haitham Abaza
- Heidelberger Institut für Theoretische Studien gGmbH, Heidelberg, Germany
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René Hänsel
- IMISE, Universität Leipzig, Leipzig, Germany
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Masoud Abedi
- IMISE, Universität Leipzig, Leipzig, Germany
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Martin Golebiewski
- Heidelberger Institut für Theoretische Studien gGmbH, Heidelberg, Germany
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Wolfgang Müller
- Heidelberger Institut für Theoretische Studien gGmbH, Heidelberg, Germany
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Frank A. Meineke
- IMISE, Universität Leipzig, Leipzig, Germany
| Published: | September 6, 2024 |
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Outline
Text
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 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.
The authors declare that they have no competing interests.
The authors declare that an ethics committee vote is not required.
References
- 1.
- Schmidt CO, Darms J, Shutsko A, Löbe M, Nagrani R, Seifert B, et al. Facilitating Study and Item Level Browsing for Clinical and Epidemiological COVID-19 Studies. Stud Health Technol Inform. 2021;281:794–8: DOI: 10.3233/SHTI210284
- 2.
- Fluck J, Golebiewski M, Darms J. Data Publication for Personalised Health Data. Proc Conf Res Data Infrastr. 2023. DOI: 10.52825/cordi.v1i.392
- 3.
- NFDI4Health. Metadata schema of the NFDI4Health and the NFDI4Health Task Force COVID-19 (V3_3). PUBLISSO; 2023. DOI: 10.4126/FRL01-006472531
- 4.
- NFDI4Health. Local Data Hub - Health Atlas. [Accessed 2022 Dec 16]. Available from: https://www.health-atlas.de/
- 5.
- Doiron D, Marcon Y, Fortier I, Burton P, Ferretti V. Software Application Profile: Opal and Mica: open-source software solutions for epidemiological data management, harmonization and dissemination. Int J Epidemiol. 2017;46:1372–8. DOI: 10.1093/ije/dyx180
- 6.
- King G. An Introduction to the Dataverse Network as an Infrastructure for Data Sharing. Sociological Methods & Research. 2007;36:173–99. DOI: 10.1177/0049124107306660
- 7.
- van der Velde KJ, Imhann F, Charbon B, Pang C, van Enckevort D, Slofstra M, Barbieri R, Alberts R, Hendriksen D, Kelpin F, Haan M de, Boer T de, Haakma S, Stroomberg C, Scholtens S, van de Geijn G-J, Festen EAM, Weersma RK, Swertz MA. MOLGENIS research: advanced bioinformatics data software for non-bioinformaticians. Bioinformatics. 2019;35:1076–8. DOI: 10.1093/bioinformatics/bty742
- 8.
- Wolstencroft K, Krebs O, Snoep JL, Stanford NJ, Bacall F, Golebiewski M, Kuzyakiv R, Nguyen Q, Owen S, Soiland-Reyes S, Straszewski J, van Niekerk DD, Williams AR, Malmström L, Rinn B, Müller W, Goble C. FAIRDOMHub: A repository and collaboration environment for sharing systems biology research. Nucleic Acids Res. 2017;45:D404-D407. DOI: 10.1093/nar/gkw1032
- 9.
- Kirsten T, Meineke FA, Löffler-Wirth H, Uciteli A, Beger C, Stäubert S, Löbe M, Hänsel R, Rauscher FG, Schuster JC, Peschel T, Herre H, Wagner J, Zachariae S, Engel C, Scholz M, Rahm E, Binder H, Loeffler M. The Leipzig Health Atlas - An open platform to present, archive and share bio-medical data, analyses and models online. Methods Inf Med. 2022. DOI: 10.1055/a-1914-1985
- 10.
- Meineke F, Golebiewski M, Hu X, Kirsten T, Löbe M, Klammt S, Sax U, Müller W. NFDI4Health Local Data Hubs for Finding and Accessing Health Data. Proc Conf Res Data Infrastr. 2023. DOI: 10.52825/cordi.v1i.375
- 11.
- Wilkinson MD, Dumontier M, Aalbersberg IJJ, Appleton G, Axton M, Baak A, Blomberg N, Boiten JW, da Silva Santos LB, Bourne PE, Bouwman J, Brookes AJ, Clark T, Crosas M, Dillo I, Dumon O, Edmunds S, Evelo CT, Finkers R, Gonzalez-Beltran A, Gray AJG, Groth P, Goble C, Grethe JS, Heringa J, t'Hoen PAC, Hooft R, Kuhn T, Kok R, Kok J, Lusher SJ, Martone ME, Mons A, Packer AL, Persson B, Rocca-Serra P, Roos M, van Schaik R, Sansone SA, Schultes E, Sengstag T, Slater T, Strawn G, Swertz MA, Thompson M, van der Lei J, van Mulligen E, Velterop J, Waagmeester A, Wittenburg P, Wolstencroft K, Zhao J, Mons B. The FAIR Guiding Principles for scientific data management and stewardship. Sci Data. 2016;3:160018. DOI: 10.1038/sdata.2016.18
- 12.
- Wolstencroft K, Owen S, Krebs O, Nguyen Q, Stanford NJ, Golebiewski M, Weidemann A, Bittkowski M, An L, Shockley D, Snoep JL, Mueller W, Goble C. SEEK: A systems biology data and model management platform. BMC Syst Biol. 2015;9:33. DOI: 10.1186/s12918-015-0174-y
