New study about Angelman Syndrome - Recruiting children ages 1-12

January 22, 2020

Roche Pharmaceuticals is currently sponsoring a clinical endpoint in a rare genetic syndrome called Angelman Syndrome. The company is testing new technologies and assessment tools that could be used as outcome measures in future clinical trials for Angelman. We are at an exciting time in our field of neurodevelopmental disorders, with many possible therapeutics being developed and tested that may greatly improve outcomes for these children, but for successful trials we need to identify the clinical features that need treatment and that are amenable to change.

UCLA is one of the sites of this Angelman clinical endpoint study. The Jeste Lab at UCLA is currently seeking to recruit not only children with Angelman syndrome, but also 20 typically developing children, ages 1-12, to help serve as a comparison group for our children with Angelman.

We need your help! If you have a typically developing child ages 1-12 that would like to learn about research and help us in this important effort, please contact us. Participation includes 2 visits to UCLA and 3 in-home visits. We collect information on behavior, brain activity with EEG and sleep.

You will be compensated $263 for each visit to UCLA and $132 for each home visit that you complete, which allows for a total of $1,185 for a full 12 months of participation. Additionally, all study-related assessments will be provided at no cost and you will be reimbursed for all travel expenses.

The outcome of this study will help to improve the tests and scales used in the evaluation of Angelman in the future.

Please contact the UCLA study coordinators Careese Stephens at 310-206-7404 or Logan Shurtz at 310-825-0180 for more information or to sign up!