Journal article
Sudden Unexpected Death in Epilepsy (SUDEP) summit: Recommendations and priorities for clinical action, awareness, public health and epidemiology, and basic science
Epilepsy & behavior, Vol.171, 110648
08/11/2025
DOI: 10.1016/j.yebeh.2025.110648
PMID: 40795600
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.
Details
- Title: Subtitle
- Sudden Unexpected Death in Epilepsy (SUDEP) summit: Recommendations and priorities for clinical action, awareness, public health and epidemiology, and basic science
- Creators
- Sloka S. Iyengar - Cure Epilepsy, PO Box 10572, Chicago, IL 60610, USAGardiner Lapham - Partners Against Mortality in Epilepsy, 135 South LaSalle Street, Suite 2850, Chicago, IL 60603, USAJeffrey R. Buchhalter - PhoenixGordon F. Buchanan - University of IowaElizabeth J. Donner - SickKids FoundationSonya B. Dumanis - Align TechnologyCaitlin L. Grzeskowiak - Epilepsy FoundationBrandy E. Fureman - Epilepsy FoundationLawrence J. Hirsch - Yale UniversityAlison Kukla - Partners Against Mortality in Epilepsy, 135 South LaSalle Street, Suite 2850, Chicago, IL 60603, USAOwen L. Middleton - Hennepin CountyLori L. Isom - University of MichiganDaniel Friedman - New York UniversitySally Schaeffer - Epilepsy FoundationDavid S. Auerbach - SUNY Upstate Medical University
- Resource Type
- Journal article
- Publication Details
- Epilepsy & behavior, Vol.171, 110648
- DOI
- 10.1016/j.yebeh.2025.110648
- PMID
- 40795600
- NLM abbreviation
- Epilepsy Behav
- ISSN
- 1525-5050
- eISSN
- 1525-5069
- Publisher
- Elsevier Inc
- Language
- English
- Date published
- 08/11/2025
- Academic Unit
- Neurology; Iowa Neuroscience Institute
- Record Identifier
- 9984946842302771
Metrics
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