National Study on Sudden Unexpected Death in Epilepsy

'National Study on Sudden Unexpected Death in Epilepsy' image

Initial results from population-based study of sudden unexpected death in epilepsy in the Republic of Ireland

Dr. Deirdre O'Rourke, Beaumont Hospital, Dublin

Objective

To review initial results from the National Study on Sudden, Unexpected Death in Epilepsy (SUDEP) in the Republic of Ireland.

Methods

Cases of epilepsy-related deaths, between October 2000 and September 2005, were ascertained from three independent data sources (General Practitioners, Neurologists and post-mortem registers). For all cases identified, we reviewed medical records and post-mortem reports, where available, to determine circumstances of death, and classify as definite, probable, possible and non-SUDEP deaths. As a secondary objective, potential risk factors or associations will be compared between cases and age-matched controls.

Results

All 2087 General Practitioners registered with the Health Service Executive have been contacted, with a response rate of approximately 50-60%. Follow-up contact with GPs regarding access to records, and case ascertainment from neurologists and post-mortem registers, is ongoing.

To date, 91 cases have been identified with a provisional diagnosis of probable or definite SUDEP*. It is expected that further cases will be identified as part of the ongoing case ascertainment.

Conclusion

In this retrospective study, 91 cases of probable or definite SUDEP* have been identified over a five-year period. The current population-based study is the most comprehensive study on SUDEP to be performed in the Republic of Ireland. Establishing accurate incidence figures, and identifying any potential associations or risk factors for SUDEP in Ireland, is important from both a clinical and public health perspective.

[* As all cases are coroner's cases, diagnosis remains provisional until final confirmation with the relevant coroner.]