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Study identifier: NCT05432349 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

Rett Syndrome Registry

Condition: Rett Syndrome · Rett Syndrome, Atypical · Genetic Disease  ·  Sponsor: International Rett Syndrome Foundation

PhaseN/A
Planned participants3000
Who can joinAll sexes, 0 Years to 99 Years
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Dominique Pichard  ·  513-874-3020  ·  research@rettsyndrome.org

Always discuss trial participation with your own doctor first.

Locations (19)

University of AlabamaBirmingham, Alabama, United StatesRecruiting
Children's Hospital Los AngelesLos Angeles, California, United StatesRecruiting
UCSF Benioff Children's HospitalOakland, California, United StatesRecruiting
Rady Children's Hospital - San DiegoSan Diego, California, United StatesRecruiting
Children's Hospital ColoradoDenver, Colorado, United StatesRecruiting
Nicklaus Children's HospitalMiami, Florida, United StatesRecruiting
Rush University Medical CenterChicago, Illinois, United StatesRecruiting
Kennedy Krieger InstituteBaltimore, Maryland, United StatesRecruiting
Boston Children's HospitalBoston, Massachusetts, United StatesRecruiting
Gillette Children's Specialty HealthcareSaint Paul, Minnesota, United StatesRecruiting
Washington University in St. LouisSt Louis, Missouri, United StatesRecruiting
The University of North Carolina at Chapel HillChapel Hill, North Carolina, United StatesRecruiting

+ 7 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT05432349