Flexible consent for people with rare diseases
This study is about making it easier for people with rare diseases to decide how their health information is used in research. It tests a 'dynamic consent' system, which lets you change your mind at any time about what you agree to.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have a rare disease, confirmed by a doctor or genetic test.
- Or, you may have a rare disease and are still being tested or evaluated.
- You are willing to give or manage your consent for research participation in a flexible way.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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