NCT05432349

Rett Syndrome Registry

Rett Syndrome Real World Data Observational Registry

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 3,000 (estimated)
• Sponsor: International Rett Syndrome Foundation · Academic / Other
• Sex: All
• Age: 0 Years – 99 Years
• Healthy volunteers: Not accepted

Summary

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

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

Timeline

• Start date: 2022-08-02
• Primary completion: 2027-07-01
• Completion: 2028-07-01
• First posted: 2022-06-27
• Last updated: 2023-01-11

Locations

18 sites across 1 country: United States