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The Rett Syndrome Global Registry

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

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  1. 2 versions Re-verified since Nov 12, 2024, no change to tracked fieldsv7-v8
  2. Trial status: Enrolling by Invitation to Recruiting
    • Site details revised
    • Collaborators: 7 to 6
    v6
  3. Start date changed from estimate of Sep 30, 2021 to Jan 31, 2022v5
  4. Trial status: Not Yet Recruiting to Enrolling by Invitation
    • Study sites: 0 to 1
    • Eligibility criteria revised
    • Collaborators: 6 to 7
    v4
  5. Start date: Jun 30, 2021 to Sep 30, 2021v3
  6. Re-verified, no change to tracked fieldsv2
  7. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT04900493
Lead Sponsor Rett Syndrome Research Trust
Collaborators: Baylor College of Medicine, Vanderbilt University Medical Center, Children's Hospital of Philadelphia, Rush University, Boston Children's Hospital, RTI International
Conditions
(from sponsor)		 Rett Syndrome
Related terms Rett Syndrome
Enrollment 5,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov