Actively Recruiting
Rett Syndrome Registry
Led by International Rett Syndrome Foundation · Updated on 2023-01-11
3000
Participants Needed
18
Research Sites
308 weeks
Total Duration
On this page
Sponsors
I
International Rett Syndrome Foundation
Lead Sponsor
B
Boston Children's Hospital
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Rett Syndrome Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Male or female with a pathologic loss of function alteration of MECP2
You will not qualify if you...
- Male or female with a gain of function alteration of MECP2, including those with MECP2 duplication or triplication
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 18 locations
1
University of Alabama
Birmingham, Alabama, United States, 35233
Actively Recruiting
2
Children's Hospital Los Angeles
Los Angeles, California, United States, 90027
Not Yet Recruiting
3
UCSF Benioff Children's Hospital
Oakland, California, United States, 94609
Actively Recruiting
4
Children's Hospital Colorado
Denver, Colorado, United States, 80045
Actively Recruiting
5
Rush University Medical Center
Chicago, Illinois, United States, 60612
Actively Recruiting
6
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21205
Actively Recruiting
7
Boston Children's Hospital
Boston, Massachusetts, United States, 02115
Actively Recruiting
8
Gillette Children's Specialty Healthcare
Saint Paul, Minnesota, United States, 55101
Actively Recruiting
9
Washington University in St. Louis
St Louis, Missouri, United States, 63110
Actively Recruiting
10
The Children's Hospital at Montefiore
The Bronx, New York, United States, 10467
Actively Recruiting
11
The University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States, 27517
Not Yet Recruiting
12
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Not Yet Recruiting
13
Nationwide Children's Hospital
Columbus, Ohio, United States, 43205
Not Yet Recruiting
14
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
15
Greenwood Genetic Center
Greenwood, South Carolina, United States, 29646
Actively Recruiting
16
Vanderbilt Kennedy Center
Nashville, Tennessee, United States, 37232
Actively Recruiting
17
Children's Health
Dallas, Texas, United States, 75207
Actively Recruiting
18
Texas Children's Hospital
Houston, Texas, United States, 77030
Actively Recruiting
Research Team
D
Dominique C. Pichard, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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