Actively Recruiting
The Rett Syndrome Global Registry
Led by Rett Syndrome Research Trust · Updated on 2026-02-17
5000
Participants Needed
1
Research Sites
491 weeks
Total Duration
On this page
Sponsors
R
Rett Syndrome Research Trust
Lead Sponsor
B
Baylor College of Medicine
Collaborating Sponsor
AI-Summary
What this Trial Is About
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 therapeutic developers may request access to de-identified aggregate information to further Rett research, or assist with clinical development planning to facilitate and expedite more effective clinical trials.
CONDITIONS
Official Title
The Rett Syndrome Global Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Parent or caregiver willing and able to provide written informed consent electronically before entering data
- Individuals of any age with a diagnosis of Rett syndrome and/or a mutation in MECP2, living or deceased
You will not qualify if you...
- Individuals with a genetic mutation inconsistent with Rett syndrome or diagnosed with a different disorder
- Individuals diagnosed with MECP2 Duplication Syndrome
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Rett Syndrome Research Trust
Trumbull, Connecticut, United States, 06611
Actively Recruiting
Research Team
J
Jana von Hehn, PhD
CONTACT
J
Jennifer Reynolds
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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