Retrospective SUDEP at Epilepsy Centers: A Case-Control Study

Research summary

Sudden unexpected death in epilepsy (SUDEP) is a tragic complication of uncontrolled epilepsy, occurring when no other cause of death can be found. Every year between 5 and 9 in 1000 people suffering from epilepsy die from SUDEP; over 40 years up to 12% of patients with active uncontrolled epilepsy may die. In 2008, the NIH National Institute for Neurological Disorders and Stroke (NINDS) convened a workshop to assess current SUDEP knowledge and to make recommendations. The group concluded that multicentre studies are needed to understand better who may be at risk of SUDEP, and to determine whether there are markers of who may be high risk for SUDEP (Hirsch et al, 2011). This multicentre pilot study is led from NYU, USA (PI Dr Orrin Devinsky); it involves a great number of centers throughout the world who are contributing cases. The aim is to examine clinical risk factors for SUDEP. The workplan is to select patients with treatment-resistant epilepsy who underwent video EEG monitoring at five institutions (i.e Oxford University Hospitals, Evelina Children's Hospital, King’s College London, National Hospital for Neurology and Neurosurgery, and Epilepsy Society, Gowers Center) in two or more consecutive years and had a seizure recorded. We will then establish mortality in this group, and as a second step determine who died of SUDEP (probable and definite based on established criteria; Nashef et al., 2012). Each SUDEP case will be compared to two control subjects of same age and gender having had video EEG and seizures recorded in the same retrospective two year time period. We plan to collect available clinical data from the clinical chart, including seizure history, medication history, EEG traces, brain MRIs, genetic studies, ECGs, laboratory studies. This study will provide feasibility data for a larger multi-centre study to identify biomarkers associated with SUDEP.

Principal Investigator

Arjune Sen

Contact us

Email: dendron@ouh.nhs.uk

IRAS number

249319