Rett Syndrome Real World Data Observational Registry

Status: Recruiting
Location: See all (18) locations...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Maximum Age: 99
Healthy Volunteers: f
View:

• Male or female with a pathologic loss of function alteration of MECP2

Locations
United States
Alabama
University of Alabama
RECRUITING
Birmingham
California
Children's Hospital Los Angeles
NOT_YET_RECRUITING
Los Angeles
UCSF Benioff Children's Hospital
RECRUITING
Oakland
Colorado
Children's Hospital Colorado
RECRUITING
Denver
Illinois
Rush University Medical Center
RECRUITING
Chicago
Massachusetts
Boston Children's Hospital
RECRUITING
Boston
Maryland
Kennedy Krieger Institute
RECRUITING
Baltimore
Minnesota
Gillette Children's Specialty Healthcare
RECRUITING
Saint Paul
Missouri
Washington University in St. Louis
RECRUITING
St Louis
North Carolina
The University of North Carolina at Chapel Hill
NOT_YET_RECRUITING
Chapel Hill
New York
The Children's Hospital at Montefiore
RECRUITING
The Bronx
Ohio
Cincinnati Children's Hospital Medical Center
NOT_YET_RECRUITING
Cincinnati
Nationwide Children's Hospital
NOT_YET_RECRUITING
Columbus
Pennsylvania
Children's Hospital of Philadelphia
RECRUITING
Philadelphia
South Carolina
Greenwood Genetic Center
RECRUITING
Greenwood
Tennessee
Vanderbilt Kennedy Center
RECRUITING
Nashville
Texas
Children's Health
RECRUITING
Dallas
Texas Children's Hospital
RECRUITING
Houston
Contact Information
Primary
Dominique C. Pichard, MD
research@rettsyndrome.org
513-874-3020
Time Frame
Start Date: 2022-08-02
Estimated Completion Date: 2028-07
Participants
Target number of participants: 3000
Related Therapeutic Areas
Sponsors
Collaborators: UCSF Benioff Children's Hospital Oakland, Vanderbilt University Medical Center, Children's Hospital Colorado, Greenwood Genetic Center, Children's Hospital of Philadelphia, Montefiore Medical Center, Hugo W. Moser Research Institute at Kennedy Krieger, Inc., Hive Networks, Boston Children's Hospital, Rush University, Children's Health UTSW, Gillette Children's Specialty Healthcare, University of Alabama at Birmingham, St. Louis Children's Hospital, Baylor College of Medicine
Leads: International Rett Syndrome Foundation

This content was sourced from clinicaltrials.gov