Rett Syndrome Registry

Last updated: August 5, 2022
Sponsor: International Rett Syndrome Foundation
Overall Status: Active - Recruiting

Phase

N/A

Condition

Rett Syndrome

Treatment

N/A

Clinical Study ID

NCT05432349
  • Ages < 99
  • All Genders

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

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

Exclusion

Exclusion Criteria:

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

Study Design

Total Participants: 3000
Study Start date:
July 30, 2022
Estimated Completion Date:
July 30, 2028

Study Description

Connect with a study center

  • Center for Rare Neurological Diseases

    Norcross, Georgia 30093
    United States

    Active - Recruiting

  • Boston Children's Hospital

    Boston, Massachusetts 02115
    United States

    Active - Recruiting

  • Texas Children's Hospital

    Houston, Texas 77030
    United States

    Active - Recruiting

Not the study for you?

Let us help you find the best match. Sign up as a volunteer and receive email notifications when clinical trials are posted in the medical category of interest to you.