Dravet Syndrome Foundation

Recent papers from Dravet Syndrome Foundation

1. Beyond Seizure Control: Building the Infrastructure for Disease-Modifying Therapies in EpilepsyEpiliepsy currents/Epilepsy currents · 2026
2. Dravet Syndrome: A Primer for Behavior AnalystsBehavioral Interventions · 2026
3. From first seizure to specific antiseizure medication in Dravet syndrome: Quantifying delays in the DS ' coverED studyEpilepsia Open · 2026
4. American Epilepsy Society Clinical Practice Guideline: Infantile EpilepsyEpiliepsy currents/Epilepsy currents · 2026
5. Mental health impacts experienced by caregivers of people with Dravet syndrome: A systematic literature reviewEpilepsia · 2026
6. Evaluation of the methodology of independent Community Advisory Boards in health products research and development: a mixed-methods cross-sectional survey studyResearch Involvement and Engagement · 2026
7. Characterizing SCN1A -Related Disorders Using Real-World Data Across 681 Patient-Years2026
8. A survey of adult caregivers of people with developmental and epileptic encephalopathies: A long-term care planning needs assessmentEpilepsy & Behavior · 2025
9. Evidence demands action: An invitation to share the burden of proofEpilepsia · 2025
10. Caregiver-reported non-seizure and seizure outcomes with cannabidiol and clobazam in patients aged ≥2 years with Lennox-Gastaut syndrome or Dravet syndrome: A subgroup analysis of the BECOME surveySeizure · 2025
11. Ontology accelerates few-shot learning capability of large language model: A study in extraction of drug efficacy in a rare pediatric epilepsyInternational Journal of Medical Informatics · 2025
12. Qualitative evaluation of meaningful change in Dravet syndrome as measured by the Vineland-3: Caregiver and clinician perspectivesEpilepsy & Behavior · 2025
13. Dravet syndrome: From neurodevelopmental to neurodegenerative disease?Epilepsia · 2025
14. Emerging Genetic Therapies in EpilepsySeminars in Neurology · 2025
15. Nonseizure- and seizure-related benefits of cannabidiol treatment in the real world: plain language summary of the results from a caregiver surveyFuture Neurology · 2024
16. Caregiver-reported outcomes with real-world use of cannabidiol in Lennox-Gastaut syndrome and Dravet syndrome from the BECOME surveyEpilepsy Research · 2023
17. Non-pharmacological therapeutic needs in people with Dravet syndromeEpilepsy & Behavior · 2023
18. Evaluating adult care in Dravet syndrome upon transferring from pediatrics in the U.S.: A caregiver-based survey studyEpilepsy & Behavior · 2023
19. International consensus on diagnosis and management of Dravet syndromeEpilepsia · 2022
20. COVID‐19 vaccine in patients with Dravet syndrome: Observations and real‐world experiencesEpilepsia · 2022