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Dravet Syndrome International Consensus Project

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:

  1. Clinical presentation and laboratory diagnosis
  2. Antiseizure therapies including medications, dietary, and surgical interventions
  3. Abortive treatments, including status epilepticus management, and transition to adult care
  4. Disease modifying therapies
  5. Comorbidities, SUDEP and mortality; vaccinations
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