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Rett Syndrome Registry

Recruitingn/aAges 0 Years - 99 YearsAllInternational Rett Syndrome Foundation
NCT05432349 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

The Rett Syndrome Registry is a longitudinal observational study of individuals with MECP2 mutations and a diagnosis of Rett syndrome. Designed together with the IRSF Rett Syndrome Center of Excellence Network medical directors, this study collects data on the signs and symptoms of Rett syndrome as reported by the Rett syndrome experts and by the caregivers of individuals with Rett syndrome. This study will be used to develop consensus based guidelines for the care of your loved ones with Rett syndrome and to facilitate the development of better clinical trials and other aspects of the drug development path for Rett syndrome.

Sign in to get the eligibility rules as simple questions to take to your doctor.

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📋 Eligibility rules (as published)
Inclusion Criteria: * Male or female with a pathologic loss of function alteration of MECP2 Exclusion Criteria: * Male or female with a gain of function alteration of MECP2, including those with MEPC2 duplication or triplication
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What it tests

  • Not listed
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Where

19 sites
University of Alabama
Birmingham, United States
Children's Hospital Los Angeles
Los Angeles, United States
UCSF Benioff Children's Hospital
Oakland, United States
Rady Children's Hospital - San Diego
San Diego, United States
Children's Hospital Colorado
Denver, United States
Nicklaus Children's Hospital
Miami, United States
Rush University Medical Center
Chicago, United States
Kennedy Krieger Institute
Baltimore, United States

…and 11 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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