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The Journey to a FAIR CORE DATA SET for Diabetes Research in Germany

  • Esther Thea Inau,
  • Angela Dedié,
  • Ivona Anastasova,
  • Renate Schick,
  • Yaroslav Zdravomyslov,
  • Brigitte Fröhlich,
  • Andreas L. Birkenfeld,
  • Martin Hrabě de Angelis,
  • Michael Roden,
  • Atinkut Alamirrew Zeleke,
  • Martin Preusse,
  • Dagmar Waltemath

摘要

The German Center for Diabetes Research (DZD) established a core data set (CDS) of clinical parameters relevant for diabetes research in 2021. The CDS is central to the design of current and future DZD studies. Here, we describe the process and outcomes of FAIRifying the initial version of the CDS. We first did a baseline evaluation of the FAIRness using the FAIR Data Maturity Model. The FAIRification process and the results of this assessment led us to convert the CDS into the recommended format for spreadsheets, annotating the parameters with standardized medical codes, licensing the data set, enriching the data set with metadata, and indexing the metadata. The FAIRified version of the CDS is more suitable for data sharing in diabetes research across DZD sites and beyond. It contributes to the reusability of health research studies.