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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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Cites
Sudden unexpected death in epilepsy: current knowledge and future directions
Tomson, T., Nashef, L. A. M., & Ryvlin, P. (2008) · The Lancet Neurology · doi:10.1016/s1474-4422(08)70202-3 · Cited by 673
Self-citationSudden Unexpected Death in Epilepsy: Terminology and Definitions
Nashef, L. A. M. (1997) · Epilepsia · doi:10.1111/j.1528-1157.1997.tb06130.x · Cited by 483
Self-citationLong-Term Mortality in Childhood-Onset Epilepsy
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Apnoea and bradycardia during epileptic seizures: relation to sudden death in epilepsy.
Nashef, L. A. M., Walker, F., Allen, P. J., Sander, J. W. A. S., Shorvon, S. D., & Fish, D. R. (1996) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.60.3.297 · Cited by 363
Self-citationNashef, L. A. M., Fish, D. R., Garner, S., Sander, J. W. A. S., & Shorvon, S. D. (1995) · Epilepsia · doi:10.1111/j.1528-1157.1995.tb01061.x · Cited by 305
Self-citationSudden unexpected death in epilepsy: a series of witnessed deaths
Langan, Y. M. (2000) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.68.2.211 · Cited by 300
Long-Term Mortality in Childhood-Onset Epilepsy
Stockman, J. A. (2012) · Yearbook of Pediatrics · doi:10.1016/j.yped.2011.06.022 · Cited by 289
Sudden unexpected death in epilepsy (SUDEP): a clinical perspective and a search for risk factors
Kloster, R., & Engelskjon, T. (1999) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.67.4.439 · Cited by 272
Sudden Unexplained Death in Epilepsy: Observations from a Large Clinical Development Program
Leestma, J. E., Annegers, J. F., Brodie, M. J., Brown, S., Schraeder, P. L., Siscovick, D. S., Wannamaker, B. B., Tennis, P. S., Cierpial, M. A., & Earl, N. L. (1997) · Epilepsia · doi:10.1111/j.1528-1157.1997.tb01076.x · Cited by 246
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Ghasemi, A., Ghasemi, S., Pazoki, A., Javadi, A., & Mehrdel, R. (2026) · Research Square · doi:10.21203/rs.3.rs-8482625/v1
Marchenko, A. A., Zhuravlev, D., Skalnaya, A. A., Lebedeva, M. A., Sinkin, M. V., Трифонов, И. С., & Guekht, A. B. (2026) · Neuroscience and Behavioral Physiology · doi:10.1007/s11055-026-01947-8
Premature Mortality and Sudden Unexpected Death in Epilepsy
Diehl, B., & Sander, J. W. A. S. (2026) · Epilepsy · doi:10.1002/9781394340064.ch21
Cardiovascular and bone health comorbidities in epilepsy
Subota, A., & Josephson, C. B. (2026) · Current Opinion in Neurology · doi:10.1097/wco.0000000000001473
Translational Research Symposium: Current State of SUDEP Research
Ryan, J. M., Donner, E. J., Ali, Q. Z., Auerbach, D. S., Glasscock, E., Maganti, R. K., Sivathamboo, S., & Liu, A. L. (2026) · Epiliepsy currents/Epilepsy currents · doi:10.1177/15357597261418785
Respiratory Variability and Sudden Unexpected Death in Epilepsy
Berg, A. T. (2026) · Neurology · doi:10.1212/wnl.0000000000214838
Beşkoç, C., Karagüzel, A., Buğra, A., Çoban, E., & Akçakaya, N. H. (2026) · Frontiers in Neurology · doi:10.3389/fneur.2026.1804831
Cortical organoid model of DEPDC5-related focal cortical dysplasia and epilepsy
Maletić, M. (2022) · theses.fr (ABES) · doi:10.70675/ce51a4c6zec09z49b3z8571zd518d7fa745c
Epilepsie et Mortalité ˸ étude des facteurs de risque des morts subites Inattendues dans l'épilepsie
Serrand, C. (2024) · theses.fr (ABES) · doi:10.70675/27ce07bezfe8cz42b3z8505z52cf029488ba
Lee, H. M., Gan, X. N., Aung, K. P., Forster, I. C., Reid, C. A., & Soh, M. S. (2026) · Journal of Neurochemistry · doi:10.1111/jnc.70441 · Cited by 1
“…unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicologic or anatomic cause of death’ (Nashef et al. 2012).”
Karagüzel, A., Çoban, İ., Karagüzel, F., & Buğra, A. (2026) · Journal of Forensic and Legal Medicine · doi:10.1016/j.jflm.2026.103164
Pickard, H., O'Loughlin, E. K., Holmay, M., Lapham, G., Buchhalter, J., Donovan, B., Bhandare, A., Wykes, R. C., Sen, A., & Lubbers, L. S. (2026) · Epiliepsy currents/Epilepsy currents · doi:10.1177/15357597261442391
Shankar, R., Lapham, G., Hanna, J., Ashby, S., Kukla, A., Cowdry, T., Stirling, J., & Buchhalter, J. (2026) · Seizure · doi:10.1016/j.seizure.2026.07.005
Incer, M., & Wenker, I. C. (2026) · Neurobiology of Disease · doi:10.1016/j.nbd.2026.107524
“Sudden unexpected death in epilepsy (SUDEP) is defined as the sudden death of a person with epilepsy that is not due to status epilepticus, nor does a postmortem examination reveal another cause of death (Nashef et al., 2012).”
SEIZURE DETECTION DEVICES IN THE HOME ENVIRONMENT: A LONG SEARCH FOR LIFE-SAVING SOLUTIONS
Klecha, J., Ciemięga, J., Półchłopek, S., Kołodziej, R., Kołodziej, A., Kula, I. K., Szpanelewski, K., Lulek, S., Dziki, K., & Kucab, E. (2026) · International Journal of Innovative Technologies in Social Science · doi:10.31435/ijitss.2(50).2026.5640
Joyal, K. G., & Maguire, J. L. (2026) · Epilepsy Research · doi:10.1016/j.eplepsyres.2026.107888
Plötzlicher, unerwarteter Epilepsietod: Neue Erkenntnisse und Wege zur SUDEP-Prävention
Mann, C., & Rosenow, F. (2026) · Deutsches Ärzteblatt · doi:10.3238/persneuro.2026.08.07.01
Dague, K. O., Rosas, F. E., Gutierrez-Gomez, A., Surges, R., Mormann, F., & Kringelbach, M. L. (2026) · bioRxiv (Cold Spring Harbor Laboratory) · doi:10.64898/2026.07.30.741763
Pathophysiological frameworks and emerging preventative strategies in SUDEP
Xu, C., Wang, Y., Nie, S., Gao, J., & Guan, Y. (2026) · Frontiers in Neurology · doi:10.3389/fneur.2026.1916085
Ictal, postictal and interictal autonomic disturbances in patients with focal epilepsy
Maksimova, M. Y., Broutian, A. G., & Алексеевна, Б. Е. (2026) · Epilepsy and Paroxysmal Conditions · doi:10.17749/2077-8333/epi.par.con.2026.279
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Brazda, N., Andreu, T., Cimiano, P., & Brandt, C. (2026) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2026.111276
Shide‐Moriguchi, Y., Yamamoto, N., Kuki, I., Yamada, N., Fukuoka, M., Nukui, M., Inoue, T., Yoshida, S., Sakuma, H., Shiomi, M., et al. (2026) · Epileptic Disorders · doi:10.1002/epd2.70420
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Mortality in epilepsy and the influence of comorbid conditions and antiepileptic drugs
Aurlien, D. (2013) · NORA - Norwegian Open Research Archives
Nagła nieoczekiwana śmierć w padaczce
Janiak, S., & Kołodziejska, M. (2012) · DOAJ (DOAJ: Directory of Open Access Journals)
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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