Rett Syndrome Registry
Recruiting
Observational Study
Rett Syndrome
Rett Syndrome, Atypical
Genetic Disease
Genetic Diseases, X-Linked
Intellectual Disability
Neurobehavioral Manifestations
Neurologic Manifestations
Neurologic Disorder
Neurodevelopmental Disorders
Nervous System Diseases
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 0 – 99
- Sex
- Any
- Study type
- Observational
- Participants needed
- 3,000 (estimated)
- Sponsor
- International Rett Syndrome Foundation · Other
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About This Trial
The Rett Syndrome Registry is a longitudinal observational study of individuals with MECP2 mutations and a diagnosis of Rett syndrome. Designed together with the IRSF Rett Syndrome Center of Excellence Network medical directors, this study collects data on the signs and symptoms of Rett syndrome as reported by the Rett syndrome experts and by the caregivers of individuals with Rett syndrome. This …
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Male or female with a pathologic loss of function alteration of MECP2
Exclusion Criteria:
* Male or female with a gain of function alteration of MECP2, including those with MEPC2 duplication or triplication
Contacts