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Rett Syndrome Registry — RSR  

Nervous System Diseases Clinical Trial

Official title:
Rett Syndrome Real World Data Observational Registry

Clinical Trial 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.

Clinical Trial Description

n/a

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT05432349
Study type Observational [Patient Registry]
Source International Rett Syndrome Foundation
Contact Dominique C. Pichard, MD
Phone 513-874-3020
Email research@rettsyndrome.org
Status Recruiting
Phase
Start date August 2, 2022
Completion date July 2028
View Details
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