Table 1

Summary of identified and reviewed studies in community and tertiary centre cohorts that reported risk factors for SUDEP, giving population studied, type of study, incidence and age of death figures where available and risk factors identified

PaperSettingStudy datesCohort sizeSUDEP number of casesAge at death,
median (range)
IncidenceComment on risk factor findings
Nashef et al, 199525 (R)Special school (part residential) for children with learning difficulties and epilepsy1970–19933101419 (9–32)1/295 PYHistory of GTCS.
Nocturnal GTCS.
Unsupervised/unwitnessed terminal event in all.
Donner et al, 20026 (R)Community, Ontario, Canada1988–199813 862 (estimate)278 months to 15 years2/10 000 PY*History of GTCS.
Unsupervised/unwitnessed terminal event in 82%.
Camfield et al, 20021 (R)Community, Nova Scotia1977–1985692121No childhood SUDEP, one adult SUDEP of 692 deathsSevere symptomatic epilepsy.
Uncontrolled GTCS.
Mcgregor and Wheless, 200627 (R)Tertiary Epilepsy Centre, Tennessee, USA1992–2004NS17
(9 aged 16 or under)
13.3 (1.8–25)NS†GTCS.
Prone position.
AED polytherapy.
Subtherapeutic AEDs.
Vlooswijk et al, 200728 (R)Tertiary Epilepsy centre, Kempenhaeghe, The Netherlands1999–20044400/year (children and adults)25
(7 aged 16 or under)
10 (4–16)NS†Unsupervised (6/7 all found in bed, 1/7 witness seizure with apnoea).
Terra et al, 200929 (R)Tertiary Epilepsy Centre, St Paulo, Brazil2000–200883512
(11 aged 16 or under)
7 (2–17)NS†Uncontrolled seizures.
Weber et al, 200530 (R)Community, Basel,  Switzerland1984–200185045.954.3/10 000 PYSevere symptomatic epilepsy.
Uncontrolled GTCS.
AED polytherapy.
Ackers et al, 201131 UK General Practice Registry1993–200561909NS‡3.3/1000 PYAny epilepsy treated with AEDs.
Nesbitt et al,  201232 (R)Community, two samples X and YX: 1989–2005
Y: 2006
X: 7
Y: 25
NS‡NS†Symptomatic epilepsy.
Nickels et al,  20124 (R)Community, Olmsted County, Minnesota, USA1980–200946716 deaths
(1 SUDEP and 
1  aspiration)
NS‡0.22/1000 PYRisk for mortality (not just SUDEP) abnormal cognition, abnormal neurological examination, structural/metabolic aetiology for epilepsy and poorly controlled epilepsy.
Sillanpää and Shinnar, 201333 (P)Population-based cohort, Turku University Hospital, Turku, FinlandDiagnosed Epilepsy in 196424560 deaths
(23 SUDEP, 
5 under age 16)
0.5/1000 PYAbsence of 5-year remission.
Symptomatic generalised epilepsy.
Grønborg and Uldall, 201434 (R)Tertiary epilepsy centre, Danish Epilepsy Centre in Dianalund, Denmark1999–200819749
(4 aged under 16)
8/10000 PYSymptomatic epilepsy.
Uncontrolled seizures.
Friedman et al,  201635 Dup15q Alliance2006–2012NS10
(6 under 16)
2.6 (1.2–4.8)/1000 PY idic15 epilepsy specificUncontrolled epilepsy.
Intellectual disability (non-ambulatory).
Cooper et al,  201636 Dravet diagnosis from epilepsy genetics programme2001–2015NS102–209.32/1000 PY
Dravet specific
Unwitnessed terminal event.
Doumlele et al,  201724 (P)North American SUDEP Registry2011–2017NA39–13 (12)NS†Nocturnal GTCS.
Not treated with AEDs.
Sveinsson et al,  20177(R)Nationwide population-based Sweden2008NA7NS‡1.1/1000 PYMales for <16.
  • AED, antiepileptic drug; BECTS, benign epilepsy with centrotemporal spikes; GTCS, generalised tonic–clonic seizures; NA, not applicable; NS, not significant; R, retrospective; P, prospective; PY, person-years; SUDEP, sudden unexpected death in epilepsy.

  • *Only included cases where postmortem data were available.

  • †Incidence rate cannot be estimated as determination of cohort size was not reported as this was not part of the reviewed study’s methodology.

  • ‡Details of individual cases and ages at death were not given in the published report.