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The Rett Syndrome Global Registry

NCT04900493 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 5000

Last updated 2026-02-17

No results posted yet for this study

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 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

Sponsors & Collaborators

  • Baylor College of Medicine

    collaborator OTHER

  • Vanderbilt University Medical Center

    collaborator OTHER

  • Children's Hospital of Philadelphia

    collaborator OTHER

  • Rush University

    collaborator OTHER

  • Boston Children's Hospital

    collaborator OTHER

  • RTI International

    collaborator OTHER

  • Rett Syndrome Research Trust

    lead OTHER

Principal Investigators

  • Jana von Hehn, PhD · Rett Syndrome Research Trust

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2022-01-31
Primary Completion
2031-06-30
Completion
2031-06-30

Countries

  • United States

Study Locations

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Entities

Diseases
Companies

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04900493 on ClinicalTrials.gov