Angelman Syndrome Natural History Study
Status: Recruiting
Location: See all (11) locations...
Study Type: Observational
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Molecular diagnosis of Angelman syndrome
Locations
United States
California
Cedars-Sinai Guerin Children's
NOT_YET_RECRUITING
Los Angeles
Rady Children's Hospital, San Diego
RECRUITING
San Diego
Colorado
Children's Hospital Colorado, Anschutz Medical Campus
RECRUITING
Aurora
Georgia
Emory University School of Medicine
RECRUITING
Atlanta
Illinois
Rush University Children's Hospital
RECRUITING
Chicago
Massachusetts
Boston Children's Hospital
RECRUITING
Boston
North Carolina
The Carolina Institute for Developmental Disabilities
RECRUITING
Carrboro
Tennessee
Monroe Carell Jr. Children's Hospital at Vanderbilt
RECRUITING
Nashville
Other Locations
Canada
Alberta Children's Hospital
RECRUITING
Calgary
Children's Hospital of Eastern Ontario
RECRUITING
Ottawa
BC Children's Hospital
RECRUITING
Vancouver
Contact Information
Primary
Wen-Hann Tan, BMBS
wen-hann.tan@childrens.harvard.edu
617-355 6394
Backup
Batsheva Friedman, MA
Batsheva.Friedman@childrens.harvard.edu
617-355-2030
Time Frame
Start Date: 2018-08-01
Estimated Completion Date: 2031-04
Participants
Target number of participants: 300
Authors
Related Therapeutic Areas
Sponsors
Collaborators: University of California, San Diego, Foundation for Angelman Syndrome Therapeutics Canada, Angelman Syndrome Foundation Canada, Angelman Syndrome Foundation, Inc., Food and Drug Administration (FDA), Foundation for Angelman Syndrome Therapeutics, Angelman Syndrome Biomarker & Outcome Measure Consortium (A-BOM)
Leads: Boston Children's Hospital