Advice to Improve Uptake of Newer ASM Therapies in Dravet Syndrome

EP: 1.Symptoms and Disease Progression in Pediatric Patients With Dravet Syndrome

EP: 2.Role of SCN1A Genetic Testing in Diagnosis of Dravet Syndrome

EP: 3.Risk Factors and Risk Mitigation Strategies of SUPED for Patients With Dravet Syndrome

EP: 4.Standard of Care and Dravet Syndrome–Specific ASMs: Mechanisms and Risk Management

EP: 5.Treatment Selection and Treatment Adherence in Dravet Syndrome

EP: 6.Monitoring and Switching Therapies in Patients With Dravet Syndrome

EP: 7.Incorporating Newer ASMs in Pediatric Patients With Dravet Syndrome

EP: 8.Emerging Disease-Modifying Therapies in Dravet Syndrome

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EP: 9.Advice to Improve Uptake of Newer ASM Therapies in Dravet Syndrome

Early Genetic Testing as the Foundation

The most critical step in improving uptake of newer Dravet syndrome therapies is encouraging clinicians to overcome hesitation about genetic testing. General neurologists may never see enough Dravet syndrome cases to develop complete comfort with the condition. However, they shouldn't let this prevent them from ordering SCN1A genetic testing when clinical presentation suggests the diagnosis. Once pathologic mutations are identified that could be consistent with Dravet syndrome, the key is connecting with specialized centers rather than attempting to manage these complex cases independently. Early genetic diagnosis creates the pathway for appropriate treatment selection and specialist consultation.

Collaborative Care Model Between Specialists and Local Providers

The optimal approach involves establishing collaborative relationships between Dravet syndrome specialists and referring neurologists rather than a complete transfer of care. Specialists can provide initial treatment recommendations, medication selection guidance, and seizure action plans while maintaining ongoing consultation every 6 months to a year. Meanwhile, local neurologists continue seeing patients every 3 to 6 months for routine management. This model proves particularly valuable since patients experiencing prolonged seizures requiring hospitalization will likely be admitted to facilities near their homes rather than distant specialty centers, making local neurologist familiarity with their care essential.

Building Comfort Through Collaborative Experience

The collaborative approach creates additional benefits by gradually building local neurologists' comfort levels with newer therapies. When specialists prescribe medications such as stiripentol or fenfluramine, referring physicians observe dosing strategies, administration techniques, and patient responses firsthand. Over time, this exposure increases their confidence in discussing these treatments with patients and understanding their role in Dravet syndrome management. Patients often report that their local neurologists have begun preparing them for specialist recommendations, indicating growing comfort with the treatment paradigm. This collaborative education prevents patients from remaining in the community without access to appropriate evidence-based therapies.