New app aims to give rare disease patients more control over their health data
NCT ID NCT06656247
Summary
This study is testing a new digital tool designed to help rare disease patients and their families better understand and manage their consent for research. The app aims to make the process of agreeing to share health data and samples for studies clearer and easier to update. Researchers will test the tool with about 50 rare disease patients to see if it improves their experience and engagement with medical research.
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