Angelman Syndrome Natural History Study
Angelman Syndrome Natural History Study
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.
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.
Inclusion Criteria:
Exclusion Criteria:
wen-hann.tan@childrens.harvard.edu617-355 6394
Batsheva.Friedman@childrens.harvard.edu617-355-2030
Los Angeles, California 90048, United States
Aurora, Colorado 80045, United States
Carrboro, North Carolina 27510, United States
Nashville, Tennessee 37232, United States
rwinograd@rchsd.org858-966-8453
jenifer.sargent@childrenscolorado.org720-777-4719
alaena.ashley.lim@emory.edu404-778-0832
margaret_r_porwit@rush.edu312-942-0079
wen-hann.tan@childrens.harvard.edu
Maddie.Gramling@childrens.harvard.edu617-355-2030
Hannah.Riehl@cidd.unc.edu919-962-8462
kaylee.lynch@vumc.org615-517-8225
Lindsay.Phillips@albertahealthservices.ca403-955-7445
kishor.sivanesan@cw.bc.ca604-875-2345 ext. 6834
IMoldovan@cheo.on.ca613-737-7600 ext. 2438