New digital tool lets rare disease patients control their data for research
NCT ID NCT06656247
First seen Nov 19, 2025 · Last updated May 22, 2026 · Updated 22 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 health data and samples to be used in research. The goal is to make it easier for patients to take part in studies and to improve communication between researchers and patients. 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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Genom att skicka in godkänner du våra Användarvillkor
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Conditions
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