DSF is pleased to share a recent publication by Anne Berg, PhD: Seizure burden in severe early-life epilepsy: Perspectives from parents. Dr. Berg is a Research Professor of Pediatrics (Neurology and Epilepsy) at Ann and Robert H Lurie Children’s Hospital of Chicago with over 30 years of research focus.
While seizure burden is often measured by seizure frequency, it often entails much more for caregivers. Based on a one-day workshop and a series of teleconferences with parents of children with rare epilepsies – including several parents of children with Dravet syndrome – Dr. Berg’s study identifies 3 primary components of seizure burden and their impact from the perspective of parents and providers.
The full version of Seizure burden in severe early-life epilepsy: Perspectives from parents is available here.