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Secondary use of patient data within decentralized studies using the example of rare diseases in Germany: A data scientist's exploration of process and lessons learned.

Michéle ZochChristian GierschnerAnne-Katrin AndreeffElisa HenkeMartin SedlmayrGabriele MüllerJenny TippmannHelge HebestreitDaniela ChoukairGeorg F HoffmannFleur Fritz-KebedeNicole ToepfnerReinhard BernerStephanie BiergansRaphael VerbüchelnJannik SchaafJulia FleckFelix Nikolaus WirthJosef SchepersFabian Prasser
Published in: Digital health (2024)
This work captures central challenges and describes possible solutions and can hence serve as a solid basis for the implementation and conduction of similar decentralized studies.
Keyphrases
  • electronic health record
  • case control
  • primary care
  • healthcare
  • quality improvement
  • data analysis
  • deep learning