TY - JOUR
T1 - Abbreviated report of the NIH/NINDS workshop on sudden unexpected death in epilepsy
AU - Hirsch, L. J.
AU - Donner, E. J.
AU - So, E. L.
AU - Jacobs, M.
AU - Nashef, L.
AU - Noebels, J. L.
AU - Buchhalter, J. R.
N1 - Funding Information:
Dr. Hirsch has received speaker honoraria from UCB, GlaxoSmithKline, Pfizer Inc, and Lundbeck Inc.; serves on the editorial board of the Journal of Clinical Neurophysiology and as a contributing editor for Epilepsy Currents ; receives publishing royalties for Atlas of EEG in Critical Care (Wiley-Blackwell, 2010) and UpToDate, Inc.; serves as a consultant for Lundbeck Inc. and Ikano Therapeutics Inc.; serves/has served on speakers' bureaus for GlaxoSmithKline, UCB, Pfizer Inc, and Lundbeck Inc.; and receives research support from Eisai Inc., Pfizer Inc, UCB, Lundbeck Inc., Upsher-Smith, the American Epilepsy Society, and the Epilepsy Foundation. Dr. Donner serves on the editorial board of the Journal of Child Neurology ; has received speaker honoraria from Nutrica, Inc. and the American Academy of Neurology; and has received research support from the Canadian Institutes of Health Research and C.U.R.E. Dr. So serves on the editorial board of Epilepsia, Epilepsy Research , and Journal of Clinical Neurophysiology . M. Jacobs reports no disclosures. Dr. Nashef is a trustee for Epilepsy Research UK and serves on the scientific advisory committee of Epilepsy Bereaved; receives publishing royalties for Oxford Specialist Handbooks in Neurology: Epilepsy (Oxford University Press, 2009); and has attended medical conferences as a guest of pharmaceutical companies and supervised staff funded by pharmaceutical companies carrying out audits (GlaxoSmithKline, UCB, Pfizer Inc, and Eisai Inc.). Dr. Noebels served on the editorial board of the Journal of Neuroscience and receives research support from the NIH/NINDS and the Blue Bird Circle Foundation for Pediatric Research. Dr. Buchhalter serves on scientific advisory boards for the NIH and the Charlie Foundation; serves on the editorial advisory board of Clinical Neurology News ; and receives research support from Lundbeck Inc, Pfizer Inc, and the NIH/NINDS.
PY - 2011/5/31
Y1 - 2011/5/31
N2 - Sudden unexpected death in epilepsy (SUDEP) is a devastating complication of epilepsy and is not rare. The NIH and National Institute of Neurological Disorders and Stroke sponsored a 3-day multidisciplinary workshop to advance research into SUDEP and its prevention. Parallel sessions were held: one with a focus on the science of SUDEP, and the other with a focus on issues related to the education of health care practitioners and people with epilepsy. This report summarizes the discussions and recommendations of the workshop, including lessons learned from investigations of sudden infant death syndrome (SIDS), sudden cardiac death, autonomic and respiratory physiology, medical devices, genetics, and animal models. Recommendations include educating all people with epilepsy about SUDEP as part of their general education on the potential harm of seizures, except in extenuating circumstances. Increasing awareness of SUDEP may facilitate improved seizure control, possibly decreasing SUDEP incidence. There have been significant advances in our understanding of the clinical and physiologic features of SIDS, sudden cardiac death, and SUDEP in both people and animals. Research should continue to focus on the cardiac, autonomic, respiratory, and genetic factors that likely contribute to the risk of SUDEP. Multicenter collaborative research should be encouraged, especially investigations with direct implications for the prevention of SUDEP. An ongoing SUDEP Coalition has been established to facilitate this effort. With the expansion of clinical, genetic, and basic science research, there is reasonable hope of advancing our understanding of SUDEP and ultimately our ability to prevent it.
AB - Sudden unexpected death in epilepsy (SUDEP) is a devastating complication of epilepsy and is not rare. The NIH and National Institute of Neurological Disorders and Stroke sponsored a 3-day multidisciplinary workshop to advance research into SUDEP and its prevention. Parallel sessions were held: one with a focus on the science of SUDEP, and the other with a focus on issues related to the education of health care practitioners and people with epilepsy. This report summarizes the discussions and recommendations of the workshop, including lessons learned from investigations of sudden infant death syndrome (SIDS), sudden cardiac death, autonomic and respiratory physiology, medical devices, genetics, and animal models. Recommendations include educating all people with epilepsy about SUDEP as part of their general education on the potential harm of seizures, except in extenuating circumstances. Increasing awareness of SUDEP may facilitate improved seizure control, possibly decreasing SUDEP incidence. There have been significant advances in our understanding of the clinical and physiologic features of SIDS, sudden cardiac death, and SUDEP in both people and animals. Research should continue to focus on the cardiac, autonomic, respiratory, and genetic factors that likely contribute to the risk of SUDEP. Multicenter collaborative research should be encouraged, especially investigations with direct implications for the prevention of SUDEP. An ongoing SUDEP Coalition has been established to facilitate this effort. With the expansion of clinical, genetic, and basic science research, there is reasonable hope of advancing our understanding of SUDEP and ultimately our ability to prevent it.
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UR - http://www.scopus.com/inward/citedby.url?scp=79958145636&partnerID=8YFLogxK
U2 - 10.1212/WNL.0b013e31821de7de
DO - 10.1212/WNL.0b013e31821de7de
M3 - Review article
C2 - 21543734
AN - SCOPUS:79958145636
SN - 0028-3878
VL - 76
SP - 1932
EP - 1938
JO - Neurology
JF - Neurology
IS - 22
ER -