The Rett Syndrome Global Registry

Part of paid clinical trials in Trumbull, Connecticut.

Sponsor
Rett Syndrome Research Trust
Study ID
NCT04900493
Status
Recruiting
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Conditions

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Jan 31, 2022
Status verified
Feb 2026
Primary completion
Jun 30, 2031
Completion
Jun 30, 2031

Study Design

Enrollment
5,000 participants (estimated)

Primary Outcome Measure

Frequency of genetic mutation types and clinical diagnoses. [ Time Frame: 1 year ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Rett Syndrome Research TrustTrumbullConnecticut06611
Jana von Hehn, PhD
[email protected]
Jenny Reynolds
[email protected]

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