Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy

Elson L. So, Jacquelyn Bainbridge, Jeffrey R. Buchhalter, Jeanne Donalty, Elizabeth J. Donner, Alexandra Finucane, Nina M. Graves, Lawrence J. Hirsch, Georgia D. Montouris, Nancy R. Temkin, Samuel Wiebe, Tess L. Sierzant

Research output: Contribution to journalArticle

75 Scopus citations

Abstract

The American Epilepsy Society and the Epilepsy Foundation jointly convened a task force to assess the state of knowledge about sudden unexplained death in epilepsy (SUDEP). The task force had five charges: (1) develop a position statement describing if, when, what, and how SUDEP should be discussed with patients and their families and caregivers; (2) design methods by which the medical and lay communities become aware of the risk of SUDEP; (3) recommend research directions in SUDEP; (4) explore steps that organizations can take to perform large-scale, prospective studies of SUDEP to identify risk factors; and (5) identify possible preventive strategies for SUDEP. Some of the major task force recommendations include convening a multidisciplinary workshop to refine current lines of investigation and to identify additional areas of research for mechanisms underlying SUDEP; performing a survey of patients and their families and caregivers to identify effective means of education that will enhance participation in SUDEP research; conducting a campaign aimed at patients, families, caregivers, coroners, and medical examiners that emphasizes the need for complete autopsy examinations for patients with suspected SUDEP; and securing infrastructure grants to fund a consortium of centers that will conduct prospective clinical and basic research studies to identify preventable risk factors and mechanisms underlying SUDEP. For now, the principal effort in preventing SUDEP should be prompt and optimal control of seizures, especially generalized convulsive seizures. 2008 International League Against Epilepsy.

Original languageEnglish (US)
Pages (from-to)917-922
Number of pages6
JournalEpilepsia
Volume50
Issue number4
DOIs
StatePublished - Apr 1 2009

Keywords

  • Patient care
  • Preventive measures
  • Risk factors
  • Seizures

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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    So, E. L., Bainbridge, J., Buchhalter, J. R., Donalty, J., Donner, E. J., Finucane, A., Graves, N. M., Hirsch, L. J., Montouris, G. D., Temkin, N. R., Wiebe, S., & Sierzant, T. L. (2009). Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy. Epilepsia, 50(4), 917-922. https://doi.org/10.1111/j.1528-1167.2008.01906.x