The Rett Syndrome Global Registry
Recruiting
Observational Study
Rett Syndrome
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 5,000 (estimated)
- Sponsor
- Rett Syndrome Research Trust · Other
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Answer a few quick questions to see if you may meet the eligibility requirements.
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About This Trial
The Rett Global Registry is a fully remote, global, caregiver-reported registry to collect information about caring for a loved one with Rett syndrome. In addition, caregivers have the ability to track and graph their loved one's symptoms and care strategies over time, store information for central access, and opt-in to complete medical record consolidation and summary. Qualified researchers and t…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
1. Parent/caregiver must be willing and able to provide written informed consent electronically prior to entering data into the registry.
2. Rett individuals of any age, living or deceased, must have a diagnosis of Rett syndrome and/or have a mutation in MECP2.
Exclusion Criter…
Contacts