New Study Opportunity for Adults with Dravet Syndrome

Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit Dr. Andrade’s clinic at the University of Toronto, but there is an exciting opportunity for remote participation in the study through surveys and submission of video recordings.

While some studies have begun to uncover the adult presentation of DS, there are still many unknowns about the progression of adult symptoms and the preferred treatment approaches.  Research studies, like the current opportunity with Dr. Andrade, can raise awareness of DS among clinicians, lead to further research, and improve the outcomes for those living with DS.

If you are a caregiver for an adult with DS (age 18+), consider contributing to this important research effort. Dr. Andrade’s research team is interested to know about seizure frequency in adults, but also want to look beyond that to other aspects of daily life for adults with DS, including behavior, gait, posture, and mood. Participants will be sent links to several questionnaires and will additionally be asked to provide some video recordings after watching a tutorial. For more information, to ask questions, or to join the study, contact Arunan Selvarajah. The video below offers an overview of the study.