DISCUS Video Capture Study
DISCUS (Digital Study Capture to Understand Angelman Syndrome on OV101), sponsored by Ovid, is recruiting participants that are at least 4 years old, qualified and scheduled to enroll in either NEPTUNE or ELARA.
The goal of the DISCUS study is to allow caregivers the ability to share everyday activities that are meaningful to them, which otherwise may not be captured as study data.
- Be at least 4 years old at time of enrollment in DISCUS
- Be qualified and scheduled to enroll in NEPTUNE or ELARA
• If new to NEPTUNE or ELARA, have not received OV101
• If rolling over from NEPTUNE into ELARA, must enroll prior to first ELARA OV101 dose
- Caregivers use a secure mobile app to capture videos of the participant performing certain activities of daily life, like
getting ready for the day or eating a meal.
- Video activities will be recorded at 5 scheduled time points over the course of 1 year.
- Each of the 5 scheduled timepoints will require approximately 30 minutes to complete.
- DISCUS requires no travel as videos can be securely submitted from any location where you have access to
Wi-Fi and a smartphone.
- Participating families will receive a $100 gift card for each scheduled submission, for a total of up to $500.
More Information or Sign Up
The study is being run by Casimir, a clinical research organization specializing in video patient-reported data.
Questions and interest in participation can be directed to DISCUS@casimirtrials.com or call (800) 207‐7941, ext. 5.
The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.