Rett syndrome global patient and family registry
Part of Brain & nervous system, Genetic & congenital clinical trials.
This registry collects health and family information about people with Rett syndrome (or specific changes in the MECP2 gene). It helps researchers understand the condition better and plan future studies. Participation may include sharing information for living individuals or those who have passed away.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You (a parent or caregiver) must be willing and able to consent electronically before submitting information.
- The person must have a diagnosis of Rett syndrome.
- Alternatively, the person can qualify if they have a mutation in the MECP2 gene.
- The person should not have a genetic cause that suggests a different condition than Rett syndrome.
- The person should not have MECP2 duplication syndrome.
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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