Study Overview
This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.
Description
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
Quick Facts
Study Start:2022-08-02
Study Completion:2028-07
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING
Participation Criteria
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
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Contacts and Locations
Study Locations (Sites)
University of Alabama
Birmingham, Alabama, 35233
United States
Children's Hospital Los Angeles
Los Angeles, California, 90027
United States
UCSF Benioff Children's Hospital
Oakland, California, 94609
United States
Children's Hospital Colorado
Denver, Colorado, 80045
United States
Rush University Medical Center
Chicago, Illinois, 60612
United States
Kennedy Krieger Institute
Baltimore, Maryland, 21205
United States
Boston Children's Hospital
Boston, Massachusetts, 02115
United States
Gillette Children's Specialty Healthcare
Saint Paul, Minnesota, 55101
United States
Washington University in St. Louis
Saint Louis, Missouri, 63110
United States
The Children's Hospital at Montefiore
Bronx, New York, 10467
United States
The University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, 27517
United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, 45229
United States
Nationwide Children's Hospital
Columbus, Ohio, 43205
United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104
United States
Greenwood Genetic Center
Greenwood, South Carolina, 29646
United States
Vanderbilt Kennedy Center
Nashville, Tennessee, 37232
United States
Children's Health
Dallas, Texas, 75207
United States
Texas Children's Hospital
Houston, Texas, 77030
United States
Collaborators and Investigators
Sponsor: International Rett Syndrome Foundation
Study Record Dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Registration Dates
Study Start Date2022-08-02
Study Completion Date2028-07
Study Record Updates
Study Start Date2022-08-02
Study Completion Date2028-07
Terms related to this study
Keywords Provided by Researchers
- Rett syndrome
- MECP2
- Neurodevelopmental disorder
- Registry
- Natural History Study
Additional Relevant MeSH Terms
- Rett Syndrome
- Rett Syndrome, Atypical
- Genetic Disease
- Genetic Diseases, X-Linked
- Intellectual Disability
- Neurobehavioral Manifestations
- Neurologic Manifestations
- Neurologic Disorder
- Neurodevelopmental Disorders
- Nervous System Diseases