Rett Syndrome Registry

Part of paid clinical trials in Birmingham, Alabama.

Sponsor
International Rett Syndrome Foundation
Study ID
NCT05432349
Status
Recruiting
Apply to this trial

Conditions

  • Genetic Disease
  • Genetic Diseases, X-Linked
  • Intellectual Disability
  • Nervous System Diseases
  • Neurobehavioral Manifestations
  • Neurodevelopmental Disorders
  • Neurologic Disorder
  • Neurologic Manifestations
  • Rett Syndrome
  • Rett Syndrome, Atypical

Eligibility Criteria

Sex
ALL
Age
0 Years - 99 Years
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Aug 2, 2022
Status verified
Jan 2023
Primary completion
Jul 31, 2027
Completion
Jul 31, 2028

Study Design

Enrollment
3,000 participants (estimated)

Primary Outcome Measure

Natural History [ Time Frame: 5 years ]

Central Contacts

Locations (18)

FacilityCityStateZIPSite coordinators
University of AlabamaBirminghamAlabama35233-
Children's Hospital Los AngelesLos AngelesCalifornia90027-
UCSF Benioff Children's HospitalOaklandCalifornia94609-
Children's Hospital ColoradoDenverColorado80045-
Rush University Medical CenterChicagoIllinois60612-
Kennedy Krieger InstituteBaltimoreMaryland21205-
Boston Children's HospitalBostonMassachusetts02115-
Gillette Children's Specialty HealthcareSaint PaulMinnesota55101-
Washington University in St. LouisSt LouisMissouri63110-
The Children's Hospital at MontefioreThe BronxNew York10467-
The University of North Carolina at Chapel HillChapel HillNorth Carolina27517-
Cincinnati Children's Hospital Medical CenterCincinnatiOhio45229-
Nationwide Children's HospitalColumbusOhio43205-
Children's Hospital of PhiladelphiaPhiladelphiaPennsylvania19104-
Greenwood Genetic CenterGreenwoodSouth Carolina29646-
Vanderbilt Kennedy CenterNashvilleTennessee37232-
Children's HealthDallasTexas75207-
Texas Children's HospitalHoustonTexas77030-

Find similar trials in Birmingham, AL

By research site
University of Alabama· Birmingham, ALChildren's Hospital Los Angeles· Los Angeles, CAUCSF Benioff Children's Hospital· Oakland, CAChildren's Hospital Colorado· Denver, CORush University Medical Center· Chicago, ILKennedy Krieger Institute· Baltimore, MD

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