Summary

Location
at UCSD
Dates
study started
completion around

Description

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.

Details

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.

Keywords

Angelman Syndrome, Syndrome

Eligibility

You can join if…

- Molecular diagnosis of Angelman syndrome

You CAN'T join if...

- Presence of another condition, unrelated to Angelman syndrome, that affects neurodevelopment

Locations

  • Rady Children's Hospital, San Diego accepting new patients
    San Diego California 92123 United States
  • BC Children's Hospital accepting new patients
    Vancouver British Columbia Canada

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Boston Children's Hospital
ID
NCT04507997
Study Type
Observational
Participants
Expecting 300 study participants
Last Updated