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  1. Soltani N, Dietz T, Ochterbeck D, Dierkes J, Restel K, Christianson L, De Santis KK, Zeeb H. Digital information exchange between the public and researchers in health studies: Scoping review. Journal of Medical Internet Research. 2025;27e63373. https://doi.org/10.2196/63373

  2. Li F, Wang Y, Beyan O, Schöneck M, Caldeira LL. Voxel-wise Medical Images Generalization for Eliminating Distribution Shift. ACM Trans. Knowl. Discov. Data 2024. https://doi.org/10.1145/3643034

  3. Kühnel L, Schneider J, Perrar I, et al. Synthetic data generation for a longitudinal cohort study – evaluation, method extension and reproduction of published data analysis results. Sci Rep. 2024;14:14412. https://doi.org/10.1038/s41598-024-62102-2

  4. Pigeot I, Ahrens W, Darms J, et al. Making Epidemiological and Clinical Studies FAIR Using the Example of COVID-19. Datenbank Spektrum. 2024;24:117-128. https://doi.org/10.1007/s13222-024-00477-2

  5. Elwes MR, Troglio A, Abedi M, Golebiewski M, Meineke F, Kirsten T, Namer B, Beyan O, Kutafina E. Semi-Automatic Export of Electrophysiological Metadata to NFDI4Health Local Data Hubs: Use Case of Microneurography odML-Tables – A Technical Case Report. Stud Health Technol Inform. 2024;317:40-48. https://doi.org/10.3233/SHTI240836

  6. Lettieri, V, Kipker, DK. Synthetische Daten in der medizinischen Forschung. Datenschutz Datensich 48, 284–288 (2024). https://doi.org/10.1007/s11623-024-1931-0

  7. Li F, Kutafina E, Schoneck M, Caldeira LL, Beyan O. How Data Infrastructure Deals with Bias Problems in Medical Imaging. Stud Health Technol Inform. 2024;316:726-730. https://doi.org/10.3233/SHTI240517

  8. Elwes MR, Namer B, Troglio A, Kirsten T, Beyan O, Kutafina E. Harmonizing Microneurography Metadata with Local Data Hubs: A Concept. Stud Health Technol Inform. 2024;316:358-359. https://doi.org/10.3233/SHTI240420

  9. Struckmann S, Mariño J, Kasbohm E, Salogni E, Schmidt CO. dataquieR 2: An updated R package for FAIR data quality assessments in observational studies and electronic health record data. Zenodo; 2024. DOI: 10.5281/zenodo.10722214; https://zenodo.org/records/10722214

  10. Schneider J, Walter M, Otte K, Meurers T, Perrar I, Nöthlings U, Adams T, Fröhlich H, Prasser F, Fluck J, Kühnel L. Privacy Risk Assessment for Synthetic Longitudinal Health Data. Stud Health Technol Inform. 2024;317:270-279. https://doi.org/10.3233/SHTI240867

  11. Darms J, Clemens V, Gonzalez-Ocanto M, Brünings-Kuppe C, Cici S, Fluck J. The German Central Health Study Hub - A Service to Find and Publish Clinical, Public Health and Epidemiological Studies and Associated Documents. Stud Health Technol Inform. 2024 Aug 30;317:129-137. https://doi.org/10.3233/SHTI240847

  12. Elwes MR, Troglio A, Abedi M, Golebiewski M, Meineke F, Kirsten T, Namer B, Beyan O, Kutafina E. Semi-Automatic Export of Electrophysiological Metadata to NFDI4Health Local Data Hubs: Use Case of Microneurography odML-Tables – A Technical Case Report. 2024. DOI: 10.3233/SHTI240836; https://ebooks.iospress.nl/doi/10.3233/SHTI240836

  13. Boehm F, Sax U, Vettermann O, Kamocki P, Stoilova V. “Hello ELSA, how are you?”: Legal and Ethical Challenges in RDM, Current and Future Tasks of ELSA Activities Against the Background of AI and Anonymisation. Proceedings of the Conference on Research Data Infrastructure. 2023;1. https://doi.org/10.52825/cordi.v1i.333

  14. Sax U, Henke C, Dräger C, Bender T, Kuntz A, Golebiewski M, et al. Provenance Core Data Set: A Minimal Information Model for Data Provenance in Biomedical Research. Proceedings of the Conference on Research Data Infrastructure. 2023;1. https://doi.org/10.52825/cordi.v1i.347

  15. Fluck J, Golebiewski M, Darms J. Data Publication for Personalised Health Data: A New Publication Standard Introduced by NFDI4Health. Proceedings of the Conference on Research Data Infrastructure. 2023;1. https://doi.org/10.52825/cordi.v1i.392

  16. Dierkes J, Lindstädt B, Sax U, Hastik C, Fürst J, Hörner T, et al. Building the Next Generation of Data Savvy Biomedical Researchers. Proceedings of the Conference on Research Data Infrastructure. 2023;1. https://doi.org/10.52825/cordi.v1i.368

  17. 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: Making Distributed Data Accessible Through a SEEK-Based Platform. Proceedings of the Conference on Research Data Infrastructure. 2023;1. https://doi.org/10.52825/cordi.v1i.375

  18. Mou Y, Li F, Weber S, Haneef S, Meine H, Caldeira L, et al. Distributed Privacy-Preserving Data Analysis in NFDI4Health With the Personal Health Train. Proceedings of the Conference on Research Data Infrastructure. 2023;1. https://doi.org/10.52825/cordi.v1i.282

  19. Hammam Abu Attieh, Anna Haber, Felix Nikolaus Wirth, Benedikt Buchner, Fabian Prasser. Enabling Open Science in Medicine Through Data Sharing: An Overview and Assessment of Common Approaches from the European Perspective. Journal of Open Access to Law. 2023. https://ojs.law.cornell.edu/index.php/joal/article/view/142

  20. Schwedhelm C, Nimptsch K, Ahrens W, Hasselhorn HM, Jöckel KH, Katzke V, Kluttig A, Linkohr B, Mikolajczyk R, Nöthlings U, Perrar I, Peters A, Schmidt CO, Schmidt B, Schulze M, Stang A, Zeeb H, Pischon T. Chronic disease outcome metadata from German observational studies – public availability and FAIR principles. Scientific Data. 2023; 10, 868. https://doi.org/10.1038/s41597-023-02726-7

  21. Restel K, Depping, R. Bericht zum 1. NFDI4Health User Survey. Publisso, 2023. https://doi.org/10.4126/FRL01-006461780

  22. Intemann T, Kaulk K, Kipker D-K, Lettieri V, Stallmann C, Schmidt CO, Geidel L, Bialke M, Hampf C, Stahl D, Lablans M, Rohde F, Franke M, Kraywinkel K, Kieschke J, Bartholomäus S, Näher A-F, Tremper G, Lambarki M, March S, Prasser F, Haber AC, Drepper J, Schlünder I, Kirsten T, Pigeot I, Sax U, Buchner B, Ahrens W, Semler SC. White Paper - Verbesserung des Record Linkage für die Gesundheitsforschung in Deutschland. Publisso, 2023. https://doi.org/10.4126/FRL01-006461895

  23. Dierkes J, Fürst J, Hörner T, Klammt S, Lindstädt B, Pigeot I, Restel K, Schmidt CO, Waltemath D, Zeleke A. Training Concepts in Research Data Management and Data Science with the Focus on Health Research. Zenodo, 2023. https://doi.org/10.4126/FRL01-006441348

  24. Sasse J, Fluck J. An Annotation Workbench for Semantic Annotation of Data Collection Instruments. Studies in Health Technology and Informatics. 2023,302:108-112. https://doi.org/10.3233/SHTI230074

  25. Attieh HA, Haber A, Wirth FN, Buchner B, Prasser F. Enabling Open Science in Medicine Through Data Sharing: An Overview and Assessment of Common Approaches from the European Perspective. Special issue on Open Science and Data Protection”, Journal of Open Access to Law, 2023; 11(2), 1-10.

  26. Schickhardt C, Winkler E, Sax U, Buchner B. Dateninfrastrukturen für die Gesundheitsforschung. Bundesgesundheitsblatt. 2023;66(2):160-7. https://doi.org/10.1007/s00103-022-03648-2

  27. Intemann T, Lettieri V, Kipker D-K, Kuntz A, Ahrens W, Pigeot I, Buchner B, Sax U. Informed Consent zum Record Linkage: Best Practice und Mustertexte. Publisso, 2023. https://doi.org/10.4126/FRL01-006399943

  28. Pigeot I, Fröhlich H, Intemann T, Prause G, Wright MN. KI und die Nationale Forschungsdateninfrastruktur für personenbezogene Gesundheitsdaten (NFDI4Health). In: Dössel OS, Tobias; Rutert, Britta, editor. Künstliche Intelligenz in der Medizin. Denkanstöße aus der Akademie: Eine Schriftenreihe der Berlin-Brandenburgischen Akademie der Wissenschaften, Nr. 11. Berlin: Berlin-Brandenburgische Akademie der Wissenschaften; 2023. p. 62-74. https://edoc.bbaw.de/frontdoor/index/index/docId/3807

  29. Näher A-F, Vorisek CN, Klopfenstein SAI, Lehne M, Thun S, Alsalamah S, Pujari S, Heider D, Ahrens W, Pigeot I, Marckmann G, Jenny MA, Renard BY, Von Kleist M, Wieler LH, Balzer F, Grabenhenrich L. Secondary data for global health digitalisation. The Lancet Digital Health. 2023;5(2):e93-e101. https://doi.org/10.1016/S2589-7500(22)00195-9

  30. Pigeot I, Intemann T, Kollhorst B, Sax U, Ahrens W. FAIRifizierung von Real World Data für die Gesundheitsforschung: Ein Petitum für modernes Record Linkage. Prävention und Gesundheitsförderung. Präv Gesundheitsf (2022). https://doi.org/10.1007/s11553-022-00973-x

  31. Buchner B. Digitales Gesundheitswesen x.o [Editorial]. Zeitschrift für das gesamte Informationsrecht (ZGI). 2023;2:53. DOI 10.1628/978-3-16-162158-1; https://www.mohrsiebeck.com/buch/informationelle-menschenrechte-und-digitale-gesellschaft-9783161621581/

  32. Haber AC, Sax U, Prasser F., & NFDI4Health Consortium. Open tools for quantitative anonymization of tabular phenotype data: literature review. 2022. Briefings in Bioinformatics, 23(6), bbac440. https://doi.org/10.1093/bib/bbac440

  33. Lindstädt B, Shutsko A. Publication Policy of the National Research Data Infrastructure for Personal Health Data (NFDI4Health) and the NFDI4Health Task Force COVID-19. https://doi.org/10.4126/FRL01-006431467

  34. Mariño J, Kasbohm E, Struckmann S, Kapsner LA, Schmidt CO. R Packages for Data Quality Assessments and Data Monitoring: A Software Scoping Review with Recommendations for Future Developments. Applied Sciences. 2022;12(9):4238. https://doi.org/10.3390/app12094238

  35. Sasse J, Darms J, Fluck J. Semantic Metadata Annotation Services in the Biomedical Domain—A Literature Review. Applied Sciences. 2022;12(2):796. https://doi.org/10.3390/app12020796

  36. Vorisek CN, Lehne M, Klopfenstein SAI, Mayer PJ, Bartschke A, Haese T, Thun S. Fast Healthcare Interoperability Resources (FHIR) for Interoperability in Health Research: Systematic Review. JMIR Medical Informatics. 2022;10(7):e35724. https://doi.org/10.2196/35724

  37. Löbe M, Ulrich H, Beger C, Bender T, Bauer C, Sax U, Ingenerf J, Winter A. Improving Findability of Digital Assets in Research Data Repositories Using the W3C DCAT Vocabulary. In: Otero P, Scott P, Martin SZ, Huesing E, editors. MEDINFO 2021: One World, One Health – Global Partnership for Digital Innovation. Studies in Health Technology and Informatics. 290. Amsterdam: IOS Press; 2022. p. 61-5. https://doi.org/10.3233/SHTI220032

  38. Slowig B, Blümm M, Förstner KU, Lanczek M, Lindstädt B, Müller R, Nickenig U, Rehwald S, Schreyer L. Zertifikatskurs Forschungsdatenmanagement in NRW. o-bib. 2022;9(9):1-10. https://doi.org/10.5282/O-BIB/5833

  39. Scherer C, Endres S, Orban M, Kääb S, Massberg S, Winter A, Löbe M. Implementation of a Clinical Trial Recruitment Support System Based on Fast Healthcare Interoperability Resources (FHIR) in a Cardiology Department. In: Séroussi B, Weber P, Dhombres F, Grouin C, Liebe J-D, Pelayo S, et al., editors. Studies in Health Technology and Informatics. Challenges of Trustable AI and Added-Value on Health. Amsterdam: IOS Press; 2022. p. 440-4. https://doi.org/10.3233/SHTI220497

  40. Vorisek CN, Essenwanger EA, Klopfenstein SAI, Sass J, Henke J, Schmidt CO, Thun S, COVID NFHTF. Implementing SNOMED CT in Open Software Solutions to Enhance the Findability of COVID-19 Questionnaires. Studies in Health Technology and Informatics. 2022;294:649-53. https://doi.org/10.3233/SHTI220549

  41. Curdt C, Dierkes J, Helbig K, Lindstädt B, Ludwig J, Neumann J, Parmaksiz U. Data Stewardship im Forschungsdatenmanagement - Rollen, Aufgabenprofile, Einsatzgebiete. Bausteine Forschungsdatenmanagement. 2021;3:70-81. https://doi.org/10.17192/BFDM.2021.3.8347

  42. Fluck J, Lindstädt B, Ahrens W, Beyan O, Buchner B, Darms J, Depping R, Dierkes J, Neuhausen H, Müller W, Zeeb H, Golebiewski M, Löffler M, Löbe M, Meineke F, Klammt S, Brosteanu O, Fröhlich H, Hahn H, Schulze M, Pischon T, Nöthlings U, Sax U, Kusch H, Grabenhenrich L, Schmidt CO, Waltemath D, Semler S, Gehrke J, Kirsten T, Praßer F, Thun S, Wieler L, Pigeot I. Nationale Forschungsdateninfrastruktur für personenbezogene Gesundheitsdaten. Bausteine Forschungsdatenmanagement. 2021;2:72-85. https://doi.org/10.17192/BFDM.2021.2.8331

  43. Buchner B, Haber AC, Hahn HK, Prasser F, Kusch H, Sax U, Schmidt CO. Das Modell der Datentreuhand in der medizinischen Forschung. Datenschutz und Datensicherheit. 2021;45(12):806-10. https://doi.org/10.1007/s11623-021-1534-y

  44. Schmidt CO, Fluck J, Golebiewski M, Grabenhenrich L, Hahn H, Kirsten T, Klammt S, Löbe M, Sax U, Thun S, Pigeot I, Covid NFHTF. COVID-19-Forschungsdaten leichter zugänglich machen – Aufbau einer bundesweiten Informationsinfrastruktur. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz. 2021;64(9):1084-92. https://doi.org/10.1007/s00103-021-03386-x

  45. Darms J, Henke J, Hu X, Schmidt CO, Golebiewski M, Fluck J, NFDI4Health Task Force COVID. Improving the FAIRness of Health Studies in Germany: The German Central Health Study Hub COVID-19. Studies in Health Technology and Informatics. 2021;287:78-82. https://doi.org/10.3233/SHTI210818

  46. Klopfenstein SAI, Vorisek CN, Shutsko A, Lehne M, Sass J, Löbe M, Schmidt CO, Thun S. Fast Healthcare Interoperability Resources (FHIR) in a FAIR Metadata Registry for COVID-19 Research. Studies in Health Technology and Informatics. 2021;287:73-7. https://doi.org/10.3233/SHTI210817

  47. Schmidt CO, Darms J, Shutsko A, Löbe M, Nagrani R, Seifert B, Lindstädt B, Golebiewski M, Koleva S, Bender T, Bauer CR, Sax U, Hu X, Lieser M, Junker V, Klopfenstein S, Zeleke A, Waltemath D, Pigeot I, Fluck J, COVID NFHTF. Facilitating Study and Item Level Browsing for Clinical and Epidemiological COVID-19 Studies. Studies in Health Technology and Informatics. 2021;281:794-8. https://doi.org/10.3233/SHTI210284

  48. Vorisek CN, Klopfenstein SAI, Sass J, Lehne M, Schmidt CO, Thun S. Evaluating Suitability of SNOMED CT in Structured Searches for COVID-19 Studies. Studies in Health Technology and Informatics. 2021;281:88-92. https://doi.org/10.3233/SHTI210126

  49. Shutsko A, Lindstädt B. Nationale Forschungsdateninfrastruktur für personenbezogene Gesundheitsdaten – NFDI4Health: Pilotprojekt zu Bibliotheken und Forschungsdatenkompetenzzentren als Multiplikatoren („Data Steward”). GMS Medizin - Bibliothek - Information. 2020;20(3):Doc27. https://doi.org/10.3205/MBI000484

  50. Deutsche Forschungsgemeinschaft, ZBMed- Informationszentrum Lebenswissenschaften, Fluck J. DFG-Ausschreibung: Nationale Forschungsdateninfrastruktur – Ausschreibung 2019 für die Förderung von KonsortienNational Research Data Infrastructure for Personal Health Data (NFDI4Health). https://doi.org/10.4126/FRL01-006421856