The purpose of this interview study is to gather information about caregivers’ experiences with Angelman syndrome (AS). Caregivers of patients aged 5 to 17 years will be interviewed about their experiences with AS. Caregivers will also be asked to complete, and evaluate, a number of questionnaires in terms of their relevance to AS patients, appropriateness, and ease of completion. The study will involve caregivers of patients who are ambulatory (i.e., they do not require a wheelchair). It will involve participating in up to four interviews that will last approximately 60 to 90 minutes each, which will be done either in-person or over the phone. No treatments will be provided or tested in this study.
To learn more about this study and to find out if you are eligible, please email or call 1-866-893-0282 to be directed to the study team.