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@ARTICLE{Schwedhelm:285961,
      author       = {C. Schwedhelm and K. Nimptsch and W. Ahrens and H. M.
                      Hasselhorn and K.-H. Jöckel and V. Katzke$^*$ and A.
                      Kluttig and B. Linkohr and R. Mikolajczyk and U. Nöthlings
                      and I. Perrar and A. Peters and C. O. Schmidt and B. Schmidt
                      and M. B. Schulze and A. Stang and H. Zeeb and T. Pischon},
      title        = {{C}hronic disease outcome metadata from {G}erman
                      observational studies - public availability and {FAIR}
                      principles.},
      journal      = {Scientific data},
      volume       = {10},
      number       = {1},
      issn         = {2052-4436},
      address      = {London},
      publisher    = {Nature Publ. Group},
      reportid     = {DKFZ-2023-02549},
      pages        = {868},
      year         = {2023},
      abstract     = {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.},
      cin          = {C020},
      ddc          = {500},
      cid          = {I:(DE-He78)C020-20160331},
      pnm          = {313 - Krebsrisikofaktoren und Prävention (POF4-313)},
      pid          = {G:(DE-HGF)POF4-313},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:38052810},
      doi          = {10.1038/s41597-023-02726-7},
      url          = {https://inrepo02.dkfz.de/record/285961},
}