Angelman Syndrome Natural History Study

Boston Children's Hospital

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.

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

Age range: Not specified
Sex: All
Healthy volunteers: No

Detailed criteria

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

Locations (11)

Cedars-Sinai Guerin Children's
Los Angeles, California
Rady Children's Hospital, San Diego
San Diego, California
rwinograd@rchsd.org 858-966-8453
Children's Hospital Colorado, Anschutz Medical Campus
Aurora, Colorado
jenifer.sargent@childrenscolorado.org 720-777-4719
Emory University School of Medicine
Atlanta, Georgia
alaena.ashley.lim@emory.edu 404-778-0832
Rush University Children's Hospital
Chicago, Illinois
margaret_r_porwit@rush.edu 312-942-0079
Boston Children's Hospital
Boston, Massachusetts
wen-hann.tan@childrens.harvard.edu