NFDI4Health – Task Force COVID-19: Better understanding the COVID-19 outbreak and its consequences through integrated and harmonised research efforts

• Applicants: Professorin Dr. Juliane Fluck; Privatdozent Dr. Linus Grabenhenrich; Professor Dr.-Ing. Horst Karl Hahn; Privatdozent Dr. Sebastian Klammt; Privatdozent Dr. Wolfgang Müller; Professorin Dr. Iris Pigeot; Professor Dr. Ulrich Sax; Professor Dr. Carsten Oliver Schmidt; Professor Dr. Markus Scholz, since 7/2023; Professorin Dr. Sylvia Thun
• Subject Area: Epidemiology and Medical Biometry/Statistics
• Term: from 2020 to 2024
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 451265285

• Final Report Year: 2023

Final Report Abstract

The NFDI4Health Task Force COVID-19 sought to develop and provide methods, instruments, and tools to allow research on COVID-19 to be findable, which was urgently needed to combat the pandemic. Accordingly, its goals were to enable the professional community to receive timely and substantial information on relevant standards and survey instruments related to COVID-19, to strengthen collaborative medical, epidemiological, and public health research based on international IT standards, and to build an inventory of German COVID-19 health studies. In contrast to other initiatives undertaken in the medical field, this project also considered the public health impact of the pandemic on the general population, e.g., with regard to morbidity, mortality, medical care utilization, but also the effects of social isolation. Thus, the project team developed a central study data register, the COVID-19 Study Hub, with advanced search functionalities to support the findability of COVID-19-relevant studies as well as the access to structured health (meta) data. The COVID-19 Study Hub currently includes 1631 COVID-19 resources, 295 COVID-19 resources in children, and 29 COVID-19 data dictionaries. Moreover, 3506 questionnaire items and 21 instruments have been published on the instrument portal to date. Tools (e.g., survey instruments) and standards (e.g., for data management) have been developed and published in repositories to support new studies. Further supporting material, such as guidelines, training manuals, templates (e.g., for informed consent), instructions on record linkage as well as on data protection has been developed and made publicly available. This includes information to link inpatient, prescription, sequencing, and imaging data, as well as elaborated analysis routines and interactive web-based exploration tools. In order to achieve our aims, we cooperated with national stakeholders, e.g., the German Network University Medicine (NUM), and interacted with international initiatives (Research Data Alliance (RDA), European Clinical Research Infrastructure Network (ECRIN), Canadian Maelstrom Research). Our infrastructure, incl. the prepared materials, contribute to a timely availability of COVID-19 research results and will help improve the management of relevant COVID-19-related information. The results of the COVID-19 Task Force are continuously used to optimize processes in NFDI4Health (e.g., to develop a meta–data schema, services, and standards). Vice versa, the sustainability of the NFDI4Health Task Force COVID-19 results is ensured by the NFDI4Health consortium and its sustainability activities.

Publications

• A step forward to data sharing: developing a publication policy for research data from health-related COVID-19 studies. 18th RDA Plenary, 2021, Online
  Shutsko, A. & Lindstädt, B.
  
• COVID-19 preVIEW: Semantic Search to Explore COVID-19 Research Preprints. Studies in Health Technology and Informatics.
  Langnickel, Lisa; Baum, Roman; Darms, Johannes; Madan, Sumit & Fluck, Juliane
  
• COVID-19-Forschungsdaten leichter zugänglich machen – Aufbau einer bundesweiten Informationsinfrastruktur. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, 64(9), 1084-1092.
  Schmidt, Carsten Oliver; Fluck, Juliane; Golebiewski, Martin; Grabenhenrich, Linus; Hahn, Horst; Kirsten, Toralf; Klammt, Sebastian; Löbe, Matthias; Sax, Ulrich; Thun, Sylvia; Pigeot, Iris; Ahrens, Wolfgang; Darms, Johannes; Henke, Jörg; Hu, Xiaoming; Klopfenstein, Sophie; Langnickel, Lisa; Lassen-Schmidt, Bianca ... & Wünsche, Hannes
  
• Facilitating Study and Item Level Browsing for Clinical and Epidemiological COVID-19 Studies. Studies in Health Technology and Informatics.
  Schmidt, Carsten Oliver; Darms, Johannes; Shutsko, Aliaksandra; Löbe, Matthias; Nagrani, Rajini; Seifert, Bastian; Lindstädt, Birte; Golebiewski, Martin; Koleva, Sofiya; Bender, Theresa; Bauer, Christian Robert; Sax, Ulrich; Hu, Xiaoming; Lieser, Michael; Junker, Vivien; Klopfenstein, Sophie; Zeleke, Atinkut; Waltemath, Dagmar ... & Fluck, Juliane
  
• Improving the FAIRness of Health Studies in Germany: The German Central Health Study Hub COVID-19. Studies in Health Technology and Informatics.
  Darms, Johannes; Henke, Jörg; Hu, Xioaming; Schmidt, Carsten Oliver; Golebiewski, Martin & Fluck, Juliane
  
• NationaleForschungsdateninfrastruktur für personenbezogene Gesundheitsdaten. Bausteine Forschungsdatenmangement, (2), 72-85.
  Fluck, J., Lindstädt, B., Ahrens, W., Beyan, O., Buchner, B., Darms, J., ... & Pigeot, I.
  
• preVIEW: from a fast prototype towards a sustainable semantic search system for central access to COVID-19 preprints. Journal of EAHIL, 17(3), 8-14.
  Langnickel, Lisa; Darms, Johannes; Baum, Roman & Fluck, Juliane
  
• Publication of research data from health-related COVID-19 studies in the German Health Study Hub COVID-19 of the NFDI4Health Task Force COVID-19 – a step forward to sharing data. German Medical Science GMS Publishing House; p DocAbstr. 200
  Shutsko, A. & Lindstädt, B.
  
• Continuous development of the semantic search engine preVIEW: from COVID-19 to long COVID. Database, 2022.
  Langnickel, Lisa; Darms, Johannes; Heldt, Katharina; Ducks, Denise & Fluck, Juliane
  
• Metadata schema of the NFDI4Health and the NFDI4Health Task Force COVID-19 (V2.1). Fachrepositorium Lebenswissenschaft.
  Shutsko, A.; Schmidt, C. O.; Klopfenstein, S. A. I.; Darms, J.; Vorisek, C. N. & Golebiewski, M.
  
• Metadata schema of the NFDI4Health and the NFDI4Health Task Force COVID-19 (V3.0). Fachrepositorium Lebenswissenschaften
  Shutsko, A.; Abaza, H.; Schmidt, C. O.; Klopfenstein, S. A. I.; Darms, J.; Vorisek, C. N. & Golebiewski, M.
  
• NFDI4Health Task Force COVID-19 Metadata Schema V2.0. Fachrepositorium Lebenswissenschaften.
  Shutsko A.; Schmidt C. O.; Darms J.; Klopfenstein S. A. I.; Vorisek C. N.; Golebiewski M. & NFDI4Health Task Force COVID-19
  
• Pre2Pub—Tracking the Path From Preprint to Journal Article: Algorithm Development and Validation. Journal of Medical Internet Research, 24(4), e34072.
  Langnickel, Lisa; Podorskaja, Daria & Fluck, Juliane
  
• Publication Policy of the National Research Data Infrastructure for Personal Health Data (NFDI4Health) and the NFDI4Health Task Force COVID-19. Fachrepositorium Lebenswissenschaften
  Lindstädt, B. & Shutsko, A.
  
• Innovative Recherchetools für das Screening von Literatur zu Long COVID: Eine kooperative Zusammenarbeit zwischen RKI, ZB MED und PubPharm. GMS Medizin - Bibliothek - Information. 23(1): Doc08.
  Kroll, H.; Heldt, K. & Kuehnel, L.
  
• Metadata schema of the NFDI4Health and the NFDI4Health Task Force COVID-19 (V3.1). Fachrepositorium Lebenswissenschaften
  Abaza, H.; Shutsko, A.; Golebiewski, M.; Sophie Anne Ines Klopfenstein; Schmidt, C. O.; Vorisek, C. N.; Brüning-Kuppe, Claudia; Clemens, Vera; Darms, Johannes; Hanß, Sabine; Intemann, Tim; Jannasch, Franziska; Kasbohn, Elisa; Lindstädt, Birte; Löbe, Matthias; Orban, Ester; Perrar, Ines; Peters, Manuela; Sax, Ulrich; Schulze, Matthias; Schupp, Claudia; Schwarz, Florian; Schwedhelm, Carolina; Strathmann, Stefan; Waltemath, Dagmar; Wünsche, Hannes & Zeleke, Atinkut
  
• NFDI4Health – Task Force COVID-19. Proceedings of the Conference on Research Data Infrastructure, 1.
  Pigeot, Iris; Fluck, Juliane; Darms, Johannes & Schmidt, Carsten Oliver