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 PrasserPublished 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.