- The 2021 Curing the Epilepsies conference assembled diverse stakeholders from the epilepsy community to discuss the status of epilepsy research and transformative research priorities.
- During the 2021 conference, participants identified several key topics as indispensable for advancing epilepsy research and improving the lives of those impacted by epilepsy, including integrating epilepsy care and research, improving measurement and tracking of health outcomes, and reducing health disparities for underserved communities.
- In an editorial published after the conference, members of the epilepsy advocacy community, co-led by CURE Epilepsy’s Chief Scientific Officer Dr. Laura Lubbers, proposed development of a National Plan to address the epilepsies. This plan would include a comprehensive strategy, the infrastructure, and the expanded partnerships to rapidly translate scientific discoveries into better health outcomes for people with epilepsy.
The Curing the Epilepsies conference has been held approximately every seven years since the first one in 2000. The initial conference was established with the help of CURE Epilepsy, with governmental funding agencies, professional societies, and other patient advocates also contributing. As in the past, the 2021 conference included stakeholders such as clinicians, researchers, and especially patients and caregivers, to review scientific discoveries and transformative research priorities with the ultimate goals of 1) curing epilepsy with no side effects and 2) preventing epilepsy in people at risk. Research progress, documented in an editorial recently published in the journal Epilepsy Currents , has led to an enhanced understanding of:
- epileptogenesis, the processes by which epilepsy develops
- increased risk of premature death, especially from sudden unexpected death in epilepsy (SUDEP)
- epilepsy-associated comorbidities such as depression
- technologically– based diagnostics, especially in neuroimaging and genetic testing
- non-pharmacological treatment options, particularly for surgery and implantable devices for treating seizures .
It was also recognized that despite such compelling scientific strides, these exciting developments have yet to significantly improve health outcomes for people with epilepsy.
To truly accelerate progress and cure the epilepsies, leaders in the epilepsy advocacy community propose development of a comprehensive research strategy as part of a National Plan  to address the epilepsies. A National Plan would bring together the necessary infrastructure and expanded partnerships needed to rapidly translate scientific discoveries into better health outcomes. A key goal of the plan would include improving patient care and the quality of patient-centered data, both key to catalyzing the following four transformative priorities:
1) consolidation of research and clinical care
2) lessening of health disparities faced by underserved populations
3) consistent monitoring of patient outcomes
4) creation of a nationwide database with statistics on epilepsy burden, prevalence, incidence, epidemiology, and mortality categorized according to distinct criteria such as age, race, ethnicity, and socioeconomic status.
Carrying out the National Plan will require the combined efforts of many stakeholder groups, including researchers, clinicians, advocacy groups, and, most importantly, people with epilepsy and their families. It is crucial that the courageous voices of patients and their families and their lived experiences, are incorporated into all steps of the research planning process. Working together, we can chart the course for aligning the infrastructure, incentives, research needs, and resources to put the nation on a path toward curing the epilepsies.?
- Marsh, E.D. et al. The 2021 Epilepsy Research Benchmarks – respecting core principles, reflecting evolving community priorities. Epilepsy Currents 2021; Epub – Online first
- Miller, I.P. et al. Epilepsy community at an inflection point: translating research toward curing the epilepsies and improving patient outcomes. Epilepsy Currents 2021; Epub – Online first