Danielle Andrade, MD, MSc, FRCPC, CSCN- University of Toronto
Prospective Study of Accelerated Aging in Adults with Dravet Syndrome
Transformational Science Grant- $499,455 over 3 years
Summary from the Investigator:
Dravet syndrome is a rare and serious form of epilepsy that begins in infancy. Thanks to better medical care, most people with Dravet live into adulthood. But as they get older, many start having new problems, like trouble walking, slower movements, and changes in thinking or behavior, that aren’t well understood. This research project will follow 60 adults with Dravet syndrome over three years to learn how their health changes with age. Each year, participants will receive physical and neurological check-ups, including tests of walking, memory, and daily living skills. Caregivers will also help by reporting changes they see in the person’s day-to-day life. We will also collect blood samples to look for signs of brain aging or nerve damage, and we’ll analyze DNA patterns to see if their bodies are aging faster than expected. By combining medical tests, caregiver input, and blood-based biomarkers, this study aims to uncover how Dravet syndrome affects people as they grow older. The results will help doctors and families prepare for what to expect in adulthood and guide future research on new treatments that could slow or stop these age-related changes.
About the Investigator:
Dr. Andrade is a Professor of Neurology, the Medical Director of the Epilepsy Program at UHN and the Director of the Adult Genetic Epilepsy (AGE) Program at University of Toronto, a pioneer program established to promote care and research in adult genetic epilepsies. She has created the first fellowship program of Adult Genetic Epilepsy in Canada. She is also the Chair of the ILAE Task Force on Adults with Developmental and Epileptic Encephalopathies, former Chair and Co-Chair of the ILAE Task Force on Child to Adulthood Transition of Care, and the President of the Canadian League Against Epilepsy.
Dr. Andrade’s research interests are on the area of genetic epilepsies and their natural histories as well as the field of transition of care from pediatric to adult. Dr. Andrade and her team have identified and characterized several epilepsies and comorbidities in adults with genetic epilepsies. She has also identified the first gene associated with SUDEP (sudden, unexpected death in epilepsy) in patients with non-syndromic epilepsy. Her team has also discovered genes responsible for Lennox-Gastaut syndrome, Jeavon’s syndrome, teenage-onset neuronal ceroid lipofuccinosis progressive myoclonus epilepsy, among others.