As a community of 19 patient and professional groups across the epilepsy community, we applaud the work of the Benchmark Committee and NINDS for launching this open call for transformative priorities for "Curing the Epilepsies". Looking back over the 20 years invested in national conferences toward Curing the Epilepsies and 3 cycles of Benchmarks to set priorities, we are concerned that progress for persons living and struggling each day with epilepsy and all of its complexities has not been commensurate with the time or effort invested over two plus decades.
• Epilepsy diagnosis has continued to increase.
• Epilepsy control has not changed with 30-40% of patients still refractory or uncontrolled.
• Anti-epilepsy medications have doubled in numbers and the cost of care has doubled although seizure control has not significantly improved.
• Surgery continues to be underutilized despite large numbers of eligible candidates.
• Federal and private investment in epilepsy is outpaced by Alzheimers, MS, and Parkinsons despite epilepsies higher prevalence.
• Quality of life has not improved across the patient spectrum for both well controlled to severe patients.
• Financial toll can be extraordinary in both direct costs including access to care, treatment and management as well as indirect costs including work productivity, employment status, and caregiver burden.
• Epilepsy mortality rates have increased and deaths by SUDEP have remained largely the same.
• Our capacity to measure basic statistics of epilepsy incidence, prevalence, and death by age and by cause and other key criteria are lacking.
We believe that significant gaps in the current epilepsy research and healthcare ecosystem are preventing research progress from translating to meaningful change for patients.
To catalyze a new era of research in the epilepsies, we recommend the creation of a NIH supported national network of specialty centers across the United States actively engaged in clinical trials and other research studies to expedite the diagnosis and treatment of all epilepsies in children and adults, including those that are rare and complex.
The reimagined NIH funded network would expedite clinical evaluation and diagnosis, hasten the development and dissemination of treatment protocols, accelerate the monitoring of standardized outcomes, address deficits and disparities in care, and strengthen registry participation and collaborative research. The network would have as a primary focus improving tangible outcomes for patients and their caregivers including both seizure cessation and control as well as the quality of life for a broad range of individuals struggling with epilepsy comorbidities, and treatment effects regardless of the cause or functional status.
This call for transformative action to really put us on a path to "Curing the Epilepsies" is endorsed by 19 patient and professional organizations across the epilepsy spectrum including:
1. Child Neurology Foundation
2. CURE Epilepsy
3. Danny Did
4. Dravet Syndrome Foundation
5. Dup15q Alliance
6. Epilepsy Foundation
7. FamilieSCN2A Foundation
8. Hope for Hypothalamic Hamartomas
9. Hope for ULD™️
10. International Foundation for CDKL5 Research
11. LGS Foundation (Lennox-Gastaut Syndrome)
12. Milestones for Maxwell & SLC6A1 Connect
13. National Association of Epilepsy Centers (NAEC)
14. Phelan-McDermid Syndrome Foundation (PMSF)
15. Ring14 USA
16. TESS Research Foundation
17. The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
18. Tuberous Sclerosis Alliance
19. Wishes for Elliott