Rett Syndrome Registry

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

Sponsors & Collaborators

• Boston Children's Hospital

  collaborator OTHER

• Children's Health UTSW

  collaborator UNKNOWN

• Children's Hospital Colorado

  collaborator OTHER

• Children's Hospital of Philadelphia

  collaborator OTHER

• Gillette Children's Specialty Healthcare

  collaborator OTHER

• Greenwood Genetic Center

  collaborator OTHER

• Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

  collaborator OTHER

• Montefiore Medical Center

  collaborator OTHER

• Rush University

  collaborator OTHER

• St. Louis Children's Hospital

  collaborator OTHER

• Baylor College of Medicine

  collaborator OTHER

• University of Alabama at Birmingham

  collaborator OTHER

• UCSF Benioff Children's Hospital Oakland

  collaborator OTHER

• Vanderbilt University Medical Center

  collaborator OTHER

• Hive Networks

  collaborator UNKNOWN

• International Rett Syndrome Foundation

  lead OTHER

Eligibility

Min Age

0 Years

Max Age

99 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2022-08-02

Primary Completion

2027-07-31

Completion

2028-07-31

Countries

• United States

Study Locations