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NCT04507997Recruiting

Angelman Syndrome Natural History Study

Boston Children's Hospital

Start Date

8/1/2018

Completion Date

4/1/2031

Summary

The goal of this study is to conduct a prospective, longitudinal natural history study of children and adults with Angelman Syndrome using investigator-observed and parent-reported outcome measures to obtain data that will be useful for future clinical trials.

Detailed Description

The overall goal is to increase our understanding of the long-term natural history of Angelman syndrome and obtain Angelman-specific norms for outcome measures that can be used in clinical trials, ultimately improving the care of individuals with Angelman syndrome.

Eligibility Criteria

Age Range: No minimum to No maximum

Inclusion Criteria: * Molecular diagnosis of Angelman syndrome Exclusion Criteria: * Presence of another condition, unrelated to Angelman syndrome, that affects neurodevelopment

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Conditions

Angelman Syndrome

Locations

Cedars-Sinai Guerin Children's

Los Angeles, California 90048

United States

Rady Children's Hospital, San Diego

San Diego, California 92123

United States

Children's Hospital Colorado, Anschutz Medical Campus

Aurora, Colorado 80045

United States

Emory University School of Medicine

Atlanta, Georgia 30322

United States

Rush University Children's Hospital

Chicago, Illinois 60612

United States

Boston Children's Hospital

Boston, Massachusetts 02115

United States

The Carolina Institute for Developmental Disabilities

Carrboro, North Carolina 27510

United States

Monroe Carell Jr. Children's Hospital at Vanderbilt

Nashville, Tennessee 37232

United States

Alberta Children's Hospital

Calgary, Alberta

Canada

BC Children's Hospital

Vancouver, British Columbia

Canada

Children's Hospital of Eastern Ontario

Ottawa, Ontario

Canada