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Unifying the definitions of sudden unexpected death in epilepsy
Open accessAbstract
Summary: Sudden unexpected death in epilepsy (SUDEP) is a category of death in people with epilepsy occurring in the absence of a known structural cause of death and is most likely heterogeneous with regard to mechanisms and circumstances. SUDEP is particularly difficult to investigate in research studies for several reasons, including its relatively low incidence, its unpredictable occurrence often in unwitnessed settings, and its low rate of complete autopsy examinations. Over the past two decades, two complementary definitions have been used in most SUDEP studies, but often with variations. We propose here a unified SUDEP definition and classification to resolve current ambiguities and to retrieve cases that would not have been further studied if the previous definitions were used. The proposed Unified SUDEP Definition and Classification contains, in addition to concepts inherent in the previous definitions, nine main recommendations. (1) The word “unexpected,” and not the word “unexplained,” should be uniformly used in the term SUDEP . (2) The SUDEP category should be applied when appropriate, whether or not a terminal seizure is known to have occurred. (3) The “Possible SUDEP” category should be used only for cases with competing causes of death, with cases left unclassified when data are insufficient to reasonably permit their classification. (4) Cases that would otherwise fulfill the definition of SUDEP should be designated as “SUDEP Plus” when evidence indicates that a preexisting condition, known before or after autopsy, could have contributed to the death, which otherwise is classified as SUDEP (e.g., coronary insufficiency with no evidence of myocardial infarction or long‐QT syndrome with no documented primary ventricular arrhythmia leading to death). (5) To be considered SUDEP, the death should have occurred within 1 h from the onset of a known terminal event. (6) For status epilepticus as an exclusion criterion for SUDEP, the duration of seizure activity should be 30 min or more. (7) A specific category of SUDEP due to asphyxia should not be designated, the distinction being largely impractical on circumstantial or autopsy evidence, with more than one mechanism likely to be contributory in many cases. (8) Death occurring in water but without circumstantial or autopsy evidence of submersion should be classified as “Possible SUDEP.” If any evidence of submersion is present, the death should not be classified as SUDEP. (9) A category of “Near‐SUDEP” should be agreed to include cases in which cardiorespiratory arrest was reversed by resuscitation efforts with subsequent survival for more than 1 h. Scenarios that demonstrate the basis for each SUDEP category are described. If disagreement exists about which category fits a particular case, we suggest the use of consensus decision by a panel of informed reviewers to adjudicate the classification of the case.
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“The primary cause of death is sudden unexpected death in epilepsy (SUDEP) 17 ; other causes include cerebral oedema following status epilepticus 18 , chest infections and accidental causes 19 .”
From Developmental and epileptic encephalopathies (2024) · cites this paper as [17]
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Sorted by citations
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Sudden Unexpected Death in Epilepsy Counseling—An American Epilepsy Society Position Statement
Gaillard, W. D. (2020) · touchREVIEWS in Neurology · doi:10.17925/usn.2020.16.1.13 · Cited by 1
Sudden death in a patient with epilepsy and arterial hypertension: time for re-assessment
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“His death was clinically classified under probable SUDEP (27).”
BackgroundFROM PATHOPHYSIOLOGY TO MOLECULAR DIAGNOSIS IN SUDDEN UNEXPECTED DEATH IN EPILEPSY
Sîrbu, C. A., Corneci, D. E., Plesa, F.-C., Sîrbu, O.-M., Sandu, A.-M., & Ioan, B. G. (2016) · Romanian Journal of Neurology · doi:10.37897/rjn.2016.2.1 · Cited by 1
Sudden Deaths: A Failure of Feedback Control
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Sudden Death Due to Natural Causes
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Can we better understand sudden cardiac death by including data from unwitnessed victims?
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“A similar stratification is being used in the research area of sudden unexpected death in epilepsy (SUDEP), where classification into six categories ranging from ‘definite SUDEP’ to ‘not SUDEP’ is made based on several aspects such as autopsy findings and witness status.(10) Overall, this study provides an important b…”
MethodSudden Unexpected Death in Epilepsy (SUDEP): How Do We Prevent This Childhood Tragedy?
Mudigoudar, B. D., & Wheless, J. W. (2022) · The Journal of Pediatric Pharmacology and Therapeutics · doi:10.5863/1551-6776-27.2.99 · Cited by 1
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“SuddenUnexpected Death in Epilepsy (SUDEP) is the unexpected death of a person with epilepsy who was otherwise healthy and no other cause of death was found (Nashef et al., 2012).”
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Risk of cardiovascular abnormalities in relatives of SUDEP victims: How should we proceed?
Scorza, F. A. (2015) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2015.01.020
“Unifying the definitions of sudden unexpected death in epilepsy”: A pediatric perspective
Kirkpatrick, M., & Forsyth, R. J. (2012) · Epilepsia · doi:10.1111/j.1528-1167.2012.03498.x
“We welcome the attempts of Nashef et al. (2012) to unify existing definitions of sudden unexpected death in epilepsy (SUDEP); however, we have concerns about some of the implications, particularly in relation to pediatric epilepsy-related deaths.”
BackgroundFish consumption in individuals with Down syndrome with seizure disorder: News for prescription
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Mechanisms of SUDEP: Lessons from Cases Occurring in the Epilepsy Monitoring Unit
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“[5], [6] Despite an increasing focus on SUDEP research and its inclusion as an National Institute of Neurological Disorders and Stroke (NINDS) Area III Epilepsy Research Benchmark priority [4], [7], limited progress has been made”
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“…healthy, dies suddenly and unexpectedly for unknown reasons and is one of the leading causes of death in individuals with epilepsy and risk is increased in patients with uncontrolled seizures (Annegers, 1997; Nashef, 1997; Nashef et al., 2012; Tolstykh and Cavazos, 2013; Ellis and Szabo, 2018).”
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“Ayrıca kanalların mutasyonu sonucunda ortaya çıkan patafizyolojik elektriksel aktivite durumlarının epilepsi ve parkinson gibi çeşitli mental hastalıklar ile diğer bazı bilişsel fonksiyon bozukluklarına neden olduğu yine pek çok araştırma ile ortaya konmuştur [8, 9, 10].”
Sudden unexpected death in epilepsy: a review of literature and own observations
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“Death is not related to trauma or drowning, and it may be witnessed or not, also, it may be with or without evidence for a seizure (Nashef et al., 2012; Laxer et al., 2014).”
BackgroundPatients with generalized epilepsy are also at risk for SUDEP
Pavlova, M. K., Gerard, E. E., & Cascino, G. D. (2020) · Neurology · doi:10.1212/wnl.0000000000009286
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Hippocampal Sclerosis as a Cause of Medication-Resistant Epilepsy
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Autoimmune Causes of Medication-Resistant Epilepsy
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Resective Surgery for Medication-Resistant Epilepsy
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Ablative Surgery for Medication-Resistant Epilepsy
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“Синдром внезапной смерти при эпилепсии (SUDEP) определяется как «внезапная, неожиданная, при свидетелях или без них, не травматическая и не связанная с утоплением смерть пациента с эпилепсией, последовавшая после доказанного приступа или без него, исключая документированный эпилептический статус, и в случае, если данн…”
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Sudden Deaths: A Failure of Feedback Control
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“A sudden unexpected death in epilepsy (SUDEP) diagnosis is typically assigned postmortem when a patient with known epilepsy dies suddenly and unexpectedly following one or more epileptic seizures and there are no alternative explanations, such as trauma, drowning, status epilepticus, or myocardial infarction, to expla…”
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Sudden Death Is More Likely to Result From SARS-COV-2 Infection Than Multiple Sclerosis
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The need for autopsy in all young people dying suddenly including those with epilepsy
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Xu, Q., Xu, X., Wu, Y., Yang, Y., Gu, L., Zhang, Z., Zhang, Z., Di, X., Wang, Y., Qian, Y., et al. (2024) · bioRxiv (Cold Spring Harbor Laboratory) · doi:10.1101/2024.07.20.604434
Shankar, R., Watkins, L. V., Ashby, S., & Hanna, J. (2024) · doi:10.1093/med/9780198820758.003.0009
Duignan, K. M., Luu, H., Delgado, J. H., London, S., & Ratzan, R. M. (2024) · Resuscitation Plus · doi:10.1016/j.resplu.2024.100770
Sudden and Unexpected Natural Deaths in Adults
Cunningham, K., & Zhang, Q. (2024) · Springer eBooks · doi:10.1007/978-3-031-42038-2_4
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Ryvlin, P., Huot, M., Valton, L., Maillard, L. G., Bartoloméi, F., Derambure, P., Hirsch, É., Michel, V., Chassoux, F., Petit, J., et al. (2025) · SSRN Electronic Journal · doi:10.2139/ssrn.5207761
Self-citationSUDEP in inherited metabolic epilepsies
Latzer, I. T., Adams, C., Lapham, G., Buchhalter, J., & Pearl, P. L. (2025) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2025.110422
A case report sudden unexpected deaths in epilepsy with concomitant neuropathologies A case series
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Mortality in Children With Epilepsy
Buchhalter, J., Donner, E. J., Camfield, C., & CAMFIELD, P. R. (2025) · Elsevier eBooks · doi:10.1016/b978-0-443-10944-7.00103-7
Paulhus, K., Si, M., Trosclair, K., Aughenbaugh, E., Parkinson, M., Hall, N., Watts, M. N., Kizek, F., Bhuiyan, M. S., Dominic, P. S., et al. (2025) · bioRxiv (Cold Spring Harbor Laboratory) · doi:10.1101/2025.08.25.671830
Side Effects of Anti-seizure Medication
Zhang, L., Chung, W., Xu, X., Xu, Z., Liu, S., Li, L., Xiao, F., Wang, Z., Hong, Z., Wang, Y., et al. (2025) · Springer eBooks · doi:10.1007/978-981-96-8520-2_8
Sudden Cardiac Death and Epilepsy
Tholakanahalli, V. N. (2025) · JACC. Clinical electrophysiology · doi:10.1016/j.jacep.2025.07.019
Plötzlicher Epilepsietod – SUDEP („sudden unexpected death in epilepsy“) verstehen und verhindern
Surges, R. (2025) · DGNeurologie · doi:10.1007/s42451-025-00828-7
Metadata
- Authors
- Nashef, L., So, E. L., Ryvlin, P., & Tomson, T.
- Affiliations
- King's College Hospital (GB)
- Mayo Clinic (US)
- Lyon 1 Université (FR)
- Karolinska Institutet (SE)
- Corresponding author
- So, Elson L.
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 2011-12-22
- Volume
- 53
- Issue
- 2
- Pages
- 227-233
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W1549808427
- Cited by
- 632
- References
- 26
- Citations by year
- 2026: 34 · 2025: 54 · 2024: 39 · 2023: 57 · 2022: 38 · 2021: 70 · 2020: 69 · 2019: 59 · 2018: 55 · 2017: 39 · 2016: 30 · 2015: 35 · 2014: 24 · 2013: 20 · 2012: 8
- FWCI
- 11.60
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Clinical Neurology › Epilepsy research and treatment
- Health Sciences › Medicine › Cardiology and Cardiovascular Medicine › Cardiac electrophysiology and arrhythmias
- Health Sciences › Medicine › Emergency Medicine › Cardiac Arrest and Resuscitation
- Keywords
- sudden unexpected death in epilepsy, status epilepticus, cardiac arrest, SUDEP incidence, SUDEP risk factors, SUDEP prevention
- MeSH terms
- Death, Sudden, Epilepsy, Humans
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