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Rett Syndrome Registry (RSR)

I

International Rett Syndrome Foundation

Status

Enrolling

Conditions

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

Study type

Observational

Funder types

Other

Identifiers

NCT05432349
Pro00060206

Details and patient eligibility

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.

Enrollment

3,000 estimated patients

Sex

All

Ages

Under 99 years old

Volunteers

No Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

  • Male or female with a gain of function alteration of MECP2, including those with MEPC2 duplication or triplication

Trial contacts and locations

18

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Central trial contact

Dominique C. Pichard, MD

Data sourced from clinicaltrials.gov

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