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.
Rett Syndrome, Rett Syndrome, Atypical, Genetic Disease, Genetic Diseases, X-Linked, Intellectual Disability, Neurobehavioral Manifestations, Neurologic Manifestations, Neurologic Disorder, Neurodevelopmental Disorders, Nervous System Diseases
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.
Rett Syndrome Registry
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University of Alabama, Birmingham, Alabama, United States, 35233
Children's Hospital Los Angeles, Los Angeles, California, United States, 90027
UCSF Benioff Children's Hospital, Oakland, California, United States, 94609
Children's Hospital Colorado, Denver, Colorado, United States, 80045
Rush University Medical Center, Chicago, Illinois, United States, 60612
Kennedy Krieger Institute, Baltimore, Maryland, United States, 21205
Boston Children's Hospital, Boston, Massachusetts, United States, 02115
Gillette Children's Specialty Healthcare, Saint Paul, Minnesota, United States, 55101
Washington University in St. Louis, Saint Louis, Missouri, United States, 63110
The Children's Hospital at Montefiore, Bronx, New York, United States, 10467
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
For general information about clinical research, read Learn About Studies.
0 Years to 99 Years
ALL
No
International Rett Syndrome Foundation,
2028-07