Sudden Unexpected Death in Epilepsy (SUDEP) Summit: Recommendations and priorities for clinical action, awareness, public health and epidemiology, and basic science

Abstract

Background: It remains difficult to predict who will succumb to Sudden Unexpected Death in Epilepsy (SUDEP). As the mechanisms for SUDEP remain unknown, there are not adequate strategies to prevent SUDEP. Thus, some providers are reluctant to discuss SUDEP risk with patients. Public health surveillance and prevention efforts are limited. The SUDEP Summit aimed to identify gaps in the field and prioritize recommendations to advance basic science, clinical care, and public health approaches to mitigate SUDEP. Methods: In 2020, a diverse group of stakeholders formed the four SUDEP Summit workgroups: 1. Clinical Action, 2. Awareness and Behavior Change, 3. Public Health and Epidemiology, and 4. Basic Science. Results: Each workgroup defined priorities for action and necessary resources and partners; outlined challenges and barriers; defined metrics of success; and developed short and long-term goals. Workgroups discussed methods to prioritize SUDEP research and develop educational materials for healthcare professionals to raise awareness about the risks of SUDEP. Since the meeting, progress has been made in alignment with the workgroups’ recommendations. These include studies examining the use of wearables, clinical trials reporting SUDEP rates, tools to improve SUDEP education, policies to improve SUDEP reporting, SUDEP risk calculators, new clinically relevant models, and standardization of data collection. Significance: Advancements in SUDEP awareness, education, epidemiology, and causal mechanisms require interdisciplinary collaborative approaches between funding agencies, advocacy groups, providers, and researchers; and the development of new partnerships. More work remains to achieve the recommendations from the Summit, which highlight the fundamental importance of coordinating efforts to mitigate and end SUDEP.