Chronic disease outcome metadata from German observational studies – public availability and FAIR principles

  1. Schwedhelm, Carolina ORCID logo
  2. Nimptsch, Katharina
  3. Ahrens, Wolfgang ORCID logo
  4. Hasselhorn, Hans
  5. Jöckel, Karl-Heinz
  6. Katzke, Verena
  7. Kluttig, Alexander
  8. Linkohr, Birgit
  9. Mikolajczyk, Rafael
  10. Nöthlings, Ute
  11. Perrar, Ines
  12. Peters, Annette
  13. Schmidt, Carsten Oliver
  14. Schmidt, Börge
  15. Schulze, Matthias B.
  16. Stang, Andreas
  17. Zeeb, Hajo ORCID logo
  18. Pischon, Tobias

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Schwedhelm-et-al_2023_Chronic disease outcome metadata.pdf 1,78MB
WeightNameValue
1000 Titel
  • Chronic disease outcome metadata from German observational studies – public availability and FAIR principles
1000 Autor/in
  1. Schwedhelm, Carolina |
  2. Nimptsch, Katharina |
  3. Ahrens, Wolfgang |
  4. Hasselhorn, Hans |
  5. Jöckel, Karl-Heinz |
  6. Katzke, Verena |
  7. Kluttig, Alexander |
  8. Linkohr, Birgit |
  9. Mikolajczyk, Rafael |
  10. Nöthlings, Ute |
  11. Perrar, Ines |
  12. Peters, Annette |
  13. Schmidt, Carsten Oliver |
  14. Schmidt, Börge |
  15. Schulze, Matthias B. |
  16. Stang, Andreas |
  17. Zeeb, Hajo |
  18. Pischon, Tobias |
1000 Erscheinungsjahr 2023
1000 LeibnizOpen
1000 Publikationstyp
  1. Artikel |
1000 Online veröffentlicht
  • 2023-12-05
1000 Erschienen in
1000 Quellenangabe
  • 10(1):868
1000 FRL-Sammlung
1000 Copyrightjahr
  • 2023
1000 Lizenz
1000 Verlagsversion
  • https://doi.org/10.1038/s41597-023-02726-7 |
  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10698176/ |
1000 Ergänzendes Material
  • https://www.nature.com/articles/s41597-023-02726-7#Sec17 |
1000 Publikationsstatus
1000 Begutachtungsstatus
1000 Sprache der Publikation
1000 Abstract/Summary
  • Metadata from epidemiological studies, including chronic disease outcome metadata (CDOM), are important to be findable to allow interpretability and reusability. We propose a comprehensive metadata schema and used it to assess public availability and findability of CDOM from German population-based observational studies participating in the consortium National Research Data Infrastructure for Personal Health Data (NFDI4Health). Additionally, principal investigators from the included studies completed a checklist evaluating consistency with FAIR principles (Findability, Accessibility, Interoperability, Reusability) within their studies. Overall, six of sixteen studies had complete publicly available CDOM. The most frequent CDOM source was scientific publications and the most frequently missing metadata were availability of codes of the International Classification of Diseases, Tenth Revision (ICD-10). Principal investigators’ main perceived barriers for consistency with FAIR principles were limited human and financial resources. Our results reveal that CDOM from German population-based studies have incomplete availability and limited findability. There is a need to make CDOM publicly available in searchable platforms or metadata catalogues to improve their FAIRness, which requires human and financial resources.
1000 Sacherschließung
lokal Cancer
lokal Cardiovascular diseases
lokal Research data
lokal Metabolic disorders
1000 Fächerklassifikation (DDC)
1000 Liste der Beteiligten
  1. https://orcid.org/0000-0001-7617-6641|https://frl.publisso.de/adhoc/uri/TmltcHRzY2gsIEthdGhhcmluYQ==|https://orcid.org/0000-0003-3777-570X|https://frl.publisso.de/adhoc/uri/SGFzc2VsaG9ybiwgSGFucw==|https://frl.publisso.de/adhoc/uri/SsO2Y2tlbCwgS2FybC1IZWlueg==|https://frl.publisso.de/adhoc/uri/S2F0emtlLCBWZXJlbmE=|https://frl.publisso.de/adhoc/uri/S2x1dHRpZywgQWxleGFuZGVy|https://frl.publisso.de/adhoc/uri/TGlua29ociwgQmlyZ2l0|https://frl.publisso.de/adhoc/uri/TWlrb2xhamN6eWssIFJhZmFlbA==|https://frl.publisso.de/adhoc/uri/TsO2dGhsaW5ncywgVXRl|https://frl.publisso.de/adhoc/uri/UGVycmFyLCBJbmVz|https://frl.publisso.de/adhoc/uri/UGV0ZXJzLCBBbm5ldHRl|https://frl.publisso.de/adhoc/uri/U2NobWlkdCwgQ2Fyc3RlbiBPbGl2ZXI=|https://frl.publisso.de/adhoc/uri/U2NobWlkdCwgQsO2cmdl|https://frl.publisso.de/adhoc/uri/U2NodWx6ZSwgTWF0dGhpYXMgQi4=|https://frl.publisso.de/adhoc/uri/U3RhbmcsIEFuZHJlYXM=|https://orcid.org/0000-0001-7509-242X|https://frl.publisso.de/adhoc/uri/UGlzY2hvbiwgVG9iaWFz
1000 Label
1000 Förderer
  1. Projekt DEAL |
1000 Fördernummer
  1. -
1000 Förderprogramm
  1. Open Access funding
1000 Dateien
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  1. 1000 joinedFunding-child
    1000 Förderer Projekt DEAL |
    1000 Förderprogramm Open Access funding
    1000 Fördernummer -
1000 Objektart article
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1000 @id frl:6475315.rdf
1000 Erstellt am 2024-04-19T11:01:51.910+0200
1000 Erstellt von 266
1000 beschreibt frl:6475315
1000 Bearbeitet von 317
1000 Zuletzt bearbeitet 2024-04-19T14:28:09.376+0200
1000 Objekt bearb. Fri Apr 19 14:27:51 CEST 2024
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1000 Oai Id
  1. oai:frl.publisso.de:frl:6475315 |
1000 Sichtbarkeit Metadaten public
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