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

First listed
Jun 27, 2022
Start date
Aug 2, 2022
Status verified
Jun 2026
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 (19)

FacilityCityStateZIPSite coordinators
University of AlabamaBirminghamAlabama35233
Emily Wignall
[email protected]
(205) 638-2551
Children's Hospital Los AngelesLos AngelesCalifornia90027
Payal Gu
[email protected]
(323) 361-2471
UCSF Benioff Children's HospitalOaklandCalifornia94598
Grace Sobrero
[email protected]
(510) 428-3590
Rady Children's Hospital - San DiegoSan DiegoCalifornia92123
Karen Ditslear
[email protected]
858-966-5819
Children's Hospital ColoradoDenverColorado80045
Tim Benke
[email protected]
(720) 777-4798
Nicklaus Children's HospitalMiamiFlorida33155
Paula Schleifer
[email protected]
305-666-6511
Rush University Medical CenterChicagoIllinois60612
Emma Citow
[email protected]
(312) 942-3034
Kennedy Krieger InstituteBaltimoreMaryland21205
Constance Smith-Hicks
[email protected]
(443) 923-2778
Boston Children's HospitalBostonMassachusetts02115
David Lieberman
[email protected]
(617) 355-2063
Gillette Children's Specialty HealthcareSaint PaulMinnesota55101
Art Beisang
[email protected]
(651) 228-6455
Washington University in St. LouisSt LouisMissouri63110
Robin Ryther
[email protected]
(314) 454-6120
The University of North Carolina at Chapel HillChapel HillNorth Carolina27517
Yulissa Gonzalez
[email protected]
(984) 974-7337
Cincinnati Children's Hospital Medical CenterCincinnatiOhio45229
Rochelle Witt
[email protected]
(513) 636-4222
Nationwide Children's HospitalColumbusOhio43205
Christopher Beatty
[email protected]
(614) 722-4625
Children's Hospital of PhiladelphiaPhiladelphiaPennsylvania19104
Eric Marsh
[email protected]
(267) 426-1242
Greenwood Genetic CenterGreenwoodSouth Carolina29646
Fran Annese
[email protected]
(864) 941-8100
Vanderbilt Kennedy CenterNashvilleTennessee37232
Cary Fu
[email protected]
(615) 936-5536
Children's HealthDallasTexas75207
Dallas Armstrong
[email protected]
(214) 456-2768
Texas Children's HospitalHoustonTexas77030
Bernhard Suter
[email protected]
(832) 822-7388

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, CARady Children's Hospital - San Diego· San Diego, CAChildren's Hospital Colorado· Denver, CONicklaus Children's Hospital· Miami, FL

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