Status:
RECRUITING
The Rett Syndrome Global Registry
Lead Sponsor:
Rett Syndrome Research Trust
Collaborating Sponsors:
Baylor College of Medicine
Vanderbilt University Medical Center
Conditions:
Rett Syndrome
Eligibility:
All Genders
Brief Summary
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 trac...
Detailed Description
The Rett Syndrome Global Registry is a fully remote, global, caregiver-reported registry intended to meet the needs of caregivers, clinicians and researchers, and therapeutic developers with the goal ...
Eligibility Criteria
Inclusion
- Parent/caregiver must be willing and able to provide written informed consent electronically prior to entering data into the registry.
- Rett individuals of any age, living or deceased, must have a diagnosis of Rett syndrome and/or have a mutation in MECP2.
Exclusion
- Individuals who have a genetic mutation that is inconsistent with Rett syndrome or who have a different disorder.
- Individuals with MECP2 Duplication Syndrome
Key Trial Info
Start Date :
January 31 2022
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
June 30 2031
Estimated Enrollment :
5000 Patients enrolled
Trial Details
Trial ID
NCT04900493
Start Date
January 31 2022
End Date
June 30 2031
Last Update
November 14 2024
Active Locations (1)
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1
Rett Syndrome Research Trust
Trumbull, Connecticut, United States, 06611