SUDEP is an underreported cause of death in epilepsy patients

Sudden unexpected death in epilepsy (SUDEP) may be the most common cause of epilepsy-related death, yet it remains underreported, results of a new analysis suggest. The outcomes show that third-party reports are an effective tool to sample SUDEP deaths and are of great value to deepen the understanding of SUDEP.

SUDEP is a sudden, 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 postmortem examination does not reveal a toxicologic or anatomic cause of death [1]. “Understanding SUDEP characteristics through third-party accounts is vital, but these valuable narratives remain underutilised,” Dr Alexander Grundmann (Newcastle University, UK) observed. The opinions of friends and family of SUDEP victims have traditionally not been sought, out of fear of being inappropriate. However, their consistent message has been that they do wish to contribute to research.

The research community now sees addressing SUDEP as one of its priorities, Dr Grundmann said.

He presented the first comprehensive analysis of adult SUDEP characteristics from accounts in the SUDEP action UK epilepsy deaths register (EDR) [2]. Established in 2013, this register is a safe and secure platform for third-party reports on the death of people with (suspected) epilepsy. Included were those aged ≥15 years with a post-mortem, death certificate or narrative in keeping with SUDEP.

Of 1,056 EDR registrations, 407 met SUDEP criteria. Cases were predominantly male (59.4%) and aged 19-49 years (76.3%). “SUDEP most often occurs under the age of 30, but the oldest patient was aged 85, so the risk is never completely gone,” stressed Dr Grundmann. One of the most recognised risk factors for SUDEP is living alone, but this was not reflected in the results: 71.6% were living with family/friends. Of determinable cases, 85.9% occurred at night and 80.8% during sleep, with 63.2% found lying prone. The most common (combinations of) risk factors that were identified are shown in the analysis (see Figure).

Figure: Influence of risk factors on incidence rates of SUDEP [2]



TCS, tonic-clonic seizures

The majority (58.7%) never forgot to take medications, and 79.1% had seen a neurologist in the previous year. The majority (51.1%) had no comorbidities. SUDEP was not recorded in the death certificate in 24.9% of cases. Notably, 51.4% of reporters did not know someone could die from epilepsy. Dr Grundmann concluded: “All epilepsy patients and their relatives should be counselled on the risk of SUDEP.”

1. Nashef L, et al. Epilepsia. 2012;53(2):227-33.
2. Grundmann A, et al. The Epilepsy Deaths Register: Friend, family and care-giver reports of SUDEP in adults and older adolescents. OPR-083, EAN Congress 2025, 21-24 June, Helsinki, Finland.

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Posted on 3 September 2025