There are two interview studies to gather information about caregivers’ experiences with Angelman syndrome (AS) to better understand the symptoms and impacts of this condition. The study also aims to have caregivers complete a number of questionnaires and evaluate them in terms of their relevance to AS patients, appropriateness, and ease of completion.
- One study will involve caregivers of patients aged 5 to 17 years old.
- One study will involve caregivers of adult patients aged 18 and above.
Patients should be ambulatory (i.e., they should not require a wheelchair). If you are interested and eligible, you will be invited to participate in up to four interviews, lasting approximately 60 to 90 minutes each. These will be done either in-person at a convenient location or over the phone. There is no medical treatment being provided as part of this study. If selected to participate, you will be compensated for your time.
The studies are sponsored by Ovid Therapeutics, a biopharmaceutical company focused exclusively on developing impactful medicines for patients and families living with rare neurological disorders. The studies will be conducted by ICON, a health research organization. Please note that Ovid will not receive any identifying information about the people who take part in this study, and any information that you provide as part of the study will be reported in a way that protects your privacy and confidentiality.
If you are interested in finding out more and you are a caregiver of a patient with AS who is 5 or older, please email Angelman@iconplc.com or call 1-866-893-0282 to be directed to the study team. The study team will tell you more about the study and find out if you are eligible to participate.
This is an important study and an exciting opportunity for the voices of caregivers of children with Angelman syndrome to be heard.
The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.