Elaine C. Wirrell, MD – Mayo Clinic
DSF Research Award – $75,000 (1 year project)
Dravet Syndrome International Consensus Project (funding provide through unrestricted grants from Biocodex, Greenwich Biosciences, and Zogenix)
A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for:
- Clinical presentation and laboratory diagnosis
- Antiseizure therapies including medications, dietary, and surgical interventions
- Abortive treatments, including status epilepticus management, and transition to adult care
- Disease modifying therapies
- Comorbidities, SUDEP and mortality; vaccinations
