Clinical Research Directory
Browse clinical research sites, groups, and studies.
Rett Syndrome Registry
Sponsor: International Rett Syndrome Foundation
Summary
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.
Official title: Rett Syndrome Real World Data Observational Registry
Key Details
Gender
All
Age Range
0 Years - 99 Years
Study Type
OBSERVATIONAL
Enrollment
3000
Start Date
2022-08-02
Completion Date
2028-07
Last Updated
2023-01-11
Healthy Volunteers
No
Conditions
Locations (18)
University of Alabama
Birmingham, Alabama, United States
Children's Hospital Los Angeles
Los Angeles, California, United States
UCSF Benioff Children's Hospital
Oakland, California, United States
Children's Hospital Colorado
Denver, Colorado, United States
Rush University Medical Center
Chicago, Illinois, United States
Kennedy Krieger Institute
Baltimore, Maryland, United States
Boston Children's Hospital
Boston, Massachusetts, United States
Gillette Children's Specialty Healthcare
Saint Paul, Minnesota, United States
Washington University in St. Louis
St Louis, Missouri, United States
The Children's Hospital at Montefiore
The Bronx, New York, United States
The University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States
Nationwide Children's Hospital
Columbus, Ohio, United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
Greenwood Genetic Center
Greenwood, South Carolina, United States
Vanderbilt Kennedy Center
Nashville, Tennessee, United States
Children's Health
Dallas, Texas, United States
Texas Children's Hospital
Houston, Texas, United States