New digital tool lets rare disease patients control their research data
NCT ID NCT06656247
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study will test a new digital tool that helps people with rare diseases (or their parents) give and manage permission for their medical data and samples to be used in research. The goal is to make it easier for patients to stay involved and have a say in how their information is used. About 50 participants will try the tool and share their feedback.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
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