High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology—Implications for Real-World Data Platform Governance: Cross-Sectional Study - Takeaways - MDSpire

High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology—Implications for Real-World Data Platform Governance: Cross-Sectional Study

  • By

  • Jutta G Richter

  • Antonia Becker

  • Tim Filla

  • Hasan Acar

  • Waldemar Ockert

  • Dominykas Kriauciunas

  • Edith Aggarwal

  • Markus Schröder

  • Ralf Hansen

  • Jörg HW Distler

  • Matthias Schneider

  • June 8, 2026

  • 0 min

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  • 1

    Real-world data (RWD) provide valuable insights into patient experiences and outcomes, contrasting with the controlled nature of randomized controlled trials.

  • 2

    The study evaluates patient willingness to grant broad consent for secondary use of health data within the pan-European Data Nexus platform.

  • 3

    Broad consent is essential for ethical data use, aligning with German legislation and the European General Data Protection Regulation.

  • 4

    The DNP integrates RWD in a secure environment to enhance disease detection, treatment, and prevention through comprehensive data management.

  • 5

    Patient acceptance of broad consent is crucial for the success of RWD-driven research infrastructures and the future of real-world evidence generation.

Original Source(s)

High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology—Implications for Real-World Data Platform Governance: Cross-Sectional Study

  • by Jutta G Richter, Antonia Becker, Tim Filla, Hasan Acar, Waldemar Ockert, Dominykas Kriauciunas, Edith Aggarwal, Markus Schröder, Ralf Hansen, Jörg HW Distler, Matthias Schneider

  • June 8, 2026

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