New digital tool lets rare disease patients control their research data
NCT ID NCT06656247
First seen Nov 19, 2025 · Last updated May 15, 2026 · Updated 18 times
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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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Conditions
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