SUDEP Action

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SUDEP research updates

The 10th Asian & Oceanian Epilepsy Congress (August 2014) presented a session on mortality in epilepsy. Topics included: long-term mortality in epilepsy (Ding Ding, China); Cause-specific mortality - Eugen Trinka, Austria); Accidental and drowning deaths in epilepsy (Ernie Somerville, Australia) and Sudden Unexpected Death in Epilepsy – an update (Rosey Panelli Australia). References for Dr Panelli’s presentation are provided here:

Illinois General Assembly - IDPH-Sudden Death Epilepsy. Available from

National Coronial Information Service. Available from

North American SUDEP Registry. Available from

Senate and General Assembly of the State of New Jersey. Available from

SUDEP global conversation. Epilepsy Australia, SUDEP Action & SUDEP Aware. Available from

Arnestad, M., L. Crotti, T. O. Rognum, R. Insolia, M. Pedrazzini, C. Ferrandi, A. Vege, D. W. Wang, T. E. Rhodes, A. L. George, Jr., and P. J. Schwartz. 2007. Prevalence of long-QT syndrome gene variants in sudden infant death syndrome. Circulation 115 (3): 361-7.

Australian Bureau of Statistics (ABS). 2010. General Record of Incidence of Mortality (GRIM) Books - Epilepsy. . Canberra: ABS.

Australian Institute of Health and Welfare (AIHW). 2010. Premature mortality from chronic disease. Bulletin no. 84, Cat no. AUS 133. Canberra: AIHW.

Bardai, A., R. J. Lamberts, M. T. Blom, A. M. Spanjaart, J. Berdowski, S. R. van der Staal, H. J. Brouwer, R. W. Koster, J. W. Sander, R. D. Thijs, and H. L. Tan. 2012. Epilepsy is a risk factor for sudden cardiac arrest in the general population. PLoS One 7 (8): e42749.

Bateman, L. M., C. S. Li, and M. Seyal. 2008. Ictal hypoxemia in localization-related epilepsy: analysis of incidence, severity and risk factors. Brain 131 (Pt 12): 3239-45.

Bellon, M., R. Panelli, and F. Rillotta. 2014. Exploring the experiences and needs of people bereaved by epilepsy: results from an online Australian survey (poster). 10th Asian & Oceanian Congress, Singapore.

DeGiorgio, C. M., P. Miller, S. Meymandi, A. Chin, J. Epps, S. Gordon, J. Gornbein, and R. M. Harper. 2010. RMSSD, a measure of vagus-mediated heart rate variability, is associated with risk factors for SUDEP: the SUDEP-7 Inventory. Epilepsy Behav 19 (1): 78-81.

Ding, D., W. Wang, J. Wu, H. Yang, S. Li, X. Dai, B. Yang, T. Wang, C. Yuan, G. Ma, G. S. Bell, P. Kwan, H. M. de Boer, Z. Hong, and J. W. Sander. 2013. Premature mortality risk in people with convulsive epilepsy: long follow-up of a cohort in rural China. Epilepsia 54 (3): 512-7.

Duff, A. J. M. 2011. Determination of Sheriff Alistair Duff, Sheriff of Tayside Central and Fife at Dundee. Inquiry held under fatal accidents and sudden deaths inquiry (Scotland) Act 1976 into the deaths of Erin Casey and Christina Fiorre Ilia.

Faught, E., M. S. Duh, J. R. Weiner, A. Guerin, and M. C. Cunnington. 2008. Nonadherence to antiepileptic drugs and increased mortality: findings from the RANSOM study. Neurology 71 (20): 1572-1578.

Friedman, D., E. J. Donner, D. Stephens, C. Wright, and O. Devinsky. 2014. Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists. Epilepsy Behav 35C: 13-18.

Glasscock, E. 2013. Genomic biomarkers of SUDEP in brain and heart. Epilepsy Behav.

Goldman, A. M., E. Glasscock, J. Yoo, T. T. Chen, T. L. Klassen, and J. L. Noebels. 2009. Arrhythmia in heart and brain: KCNQ1 mutations link epilepsy and sudden unexplained death. Sci Transl Med 1 (2): 2ra6.

Hanna, N. J., M. Black, J. W. S. Sander, W. H. Smithson, R. Appleton, S. Brown, and D. R. Fish. The national sentinel clinical audit of epilepsy related death: epilepsy - death in the shadows. The Stationary Office 2002. Available from

Hesdorffer, D. C., and T. Tomson. 2011. Adjunctive antiepileptic drug therapy and prevention of SUDEP. Lancet Neurol 10 (11): 948-949.

Hesdorffer, D. C., and T. Tomson. 2013. Sudden unexpected death in epilepsy. Potential role of antiepileptic drugs. CNS Drugs 27 (2): 113-9.

Hesdorffer, D. C., T. Tomson, E. Benn, J. W. Sander, L. Nilsson, Y. Langan, T. S. Walczak, E. Beghi, M. J. Brodie, A. Hauser, ILAE Commission on Epidemiology, and Subcommission on Mortality. 2011. Combined analysis of risk factors for SUDEP. Epilepsia 52 (6): 1150-1159.

Institute of Medicine. Epilepsy across the spectrum: promoting health and understanding. The National Academies Press 2012. Available from

Jones, L., and J. T. Naude. 2013. Sudden unexpected death in epilepsy information provision to parents of children with epilepsy-a service evaluation. J Neurol Neurosurg Psychiatry 84 (11): e2.

Kalume, F. 2013. Sudden unexpected death in Dravet syndrome: respiratory and other physiological dysfunctions. Respir Physiol Neurobiol 189 (2): 324-8.

Kennelly, C., and J. Riesel. 2014. Sudden Death and Epilepsy: The views and experiences of bereaved relatives and carers. Epilepsy Bereaved 2002. Available from

Klassen, Tara L., Valerie C. Bomben, Ankita Patel, Janice Drabek, Tim T. Chen, Wenli Gu, Feng Zhang, Kevin Chapman, James R. Lupski, Jeffrey L. Noebels, and A. M. Goldman. 2014. High-resolution molecular genomic autopsy reveals complex sudden unexpected death in epilepsy risk profile. Epilepsia 55 (2): e6-e12.

Lamberts, R. J., M. T. Blom, J. Novy, M. Belluzzo, A. Seldenrijk, B. W. Penninx, J. W. Sander, H. L. Tan, and R. D. Thijs. 2014. Increased prevalence of ECG markers for sudden cardiac arrest in refractory epilepsy. J Neurol Neurosurg Psychiatry.

Lamberts, R. J., S. Laranjo, S. N. Kalitzin, D. N. Velis, I. Rocha, J. W. Sander, and R. D. Thijs. 2013. Postictal generalized EEG suppression is not associated with periictal cardiac autonomic instability in people with convulsive seizures. Epilepsia 54 (3): 523-9.

Langan, Y., L. Nashef, and J. W. Sander. 2005. Case-control study of SUDEP. Neurology 64 (7): 1131-1133.

Liebenthal, Jennifer, and James Tao. 2013. Prone Position and SUDEP (P03.133). Neurology 80 (Meeting Abstracts 1): P03.133.

Massey, C. A., L. P. Sowers, B. J. Dlouhy, and G. B. Richerson. 2014. Mechanisms of sudden unexpected death in epilepsy: the pathway to prevention. Nat Rev Neurol 10 (5): 271-82.

Miller, W. R., N. Young, D. Friedman, J. M. Buelow, and O. Devinsky. 2014. Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers. Epilepsy Behav 32: 38-41.

Moseley, B., L. Bateman, J. J. Millichap, E. Wirrell, and C. P. Panayiotopoulos. 2013. Autonomic epileptic seizures, autonomic effects of seizures, and SUDEP. Epilepsy Behav 26 (3): 375-85.

Nashef, L., E. L. So, P. Ryvlin, and T. Tomson. 2012. Unifying the definitions of sudden unexpected death in epilepsy. Epilepsia 53 (2): 227-33.

National Confidential Enquiry into Patient Outcome and Death (2006). 2006. The Coroner's Autopsy: Do we deserve better? London: NCEPOD.

National Institute for Health and Care Excellence (NICE). 2014. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. CG137. NICE 2012. Available from

Ngugi, A. K., C. Bottomley, G. Fegan, E. Chengo, R. Odhiambo, E. Bauni, B. Neville, I. Kleinschmidt, J. W. Sander, and C. R. Newton. 2014. Premature mortality in active convulsive epilepsy in rural Kenya: causes and associated factors. Neurology 82 (7): 582-9.

Powell, K. L., N. C. Jones, J. T. Kennard, C. Ng, V. Urmaliya, S. Lau, A. Tran, T. Zheng, E. Ozturk, G. Dezsi, I. Megatia, L. M. Delbridge, D. Pinault, C. A. Reid, P. J. White, and T. J. O'Brien. 2014. HCN channelopathy and cardiac electrophysiologic dysfunction in genetic and acquired rat epilepsy models. Epilepsia 55 (4): 609-20.

Richerson, G. B. 2013. Serotonin: The Anti-SuddenDeathAmine? Epilepsy Curr 13 (5): 241-4.

Ridsdale, L., J. Charlton, M. Ashworth, M. P. Richardson, and M. C. Gulliford. 2011. Epilepsy mortality and risk factors for death in epilepsy: a population-based study. Br J Gen Pract 61 (586): e271-278.

Royal College of Pathology (RCP)  Working Party on the Autopsy. Guidelines on autopsy practice: scenario 6 - deaths associated with epilepsy. The Royal College of Pathologists 2005. Available from

Rugg-Gunn, F. J., R. J. Simister, M. Squirrell, D. R. Holdright, and J. S. Duncan. 2004. Cardiac arrhythmias in focal epilepsy: a prospective long-term study. Lancet 364 (9452): 2212-9.

Ryvlin, P., L. Nashef, S. D. Lhatoo, L. M. Bateman, J. Bird, A. Bleasel, P. Boon, A. Crespel, B. A. Dworetzky, H. Hogenhaven, H. Lerche, L. Maillard, M. P. Malter, C. Marchal, J. M. Murthy, M. Nitsche, E. Pataraia,

T. Rabben, S. Rheims, B. Sadzot, A. Schulze-Bonhage, M. Seyal, E. L. So, M. Spitz, A. Szucs, M. Tan, J. X. Tao, and T. Tomson. 2013. Incidence and mechanisms of cardiorespiratory arrests in epilepsy monitoring units (MORTEMUS): a retrospective study. Lancet Neurol 12 (10): 966-77.

Ryvlin, Philippe, Michel Cucherat, and Sylvain Rheims. 2011. Risk of sudden unexpected death in epilepsy in patients given adjunctive antiepileptic treatment for refractory seizures: a meta-analysis of placebo-controlled randomised trials. The Lancet Neurology 10 (11): 961-968.

Scottish Intercollegiate Guidelines Network. Diagnosis and Management of Epilepsy in Adults. Scottish Intercollegiate Guidelines Network 2003. Available from

Seyal, M., L. M. Bateman, and C. S. Li. 2013. Impact of periictal interventions on respiratory dysfunction, postictal EEG suppression, and postictal immobility. Epilepsia 54 (2): 377-82.

Seyal, M., K. A. Hardin, and L. M. Bateman. 2012. Postictal generalized EEG suppression is linked to seizure-associated respiratory dysfunction but not postictal apnea. Epilepsia.

Shankar, R., V. Jalihal, M. Walker, R. Laugharne, B. McLean, E. Carlyon, J. Hanna, S. Brown, C. Jory, M. Tripp, A. Pace, D. Cox, and S. Brown. 2014. A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9-year population sample. Seizure 23 (5): 382-385.

Shen, H. Y., T. Li, and D. Boison. 2010. A novel mouse model for sudden unexpected death in epilepsy (SUDEP): role of impaired adenosine clearance. Epilepsia 51 (3): 465-8.

So, E. L. 2008. What is known about the mechanisms underlying SUDEP? Epilepsia 49 Suppl 9: 93-8.

So, E. L., J. Bainbridge, J. R. Buchhalter, J. Donalty, E. J. Donner, A. Finucane, N. M. Graves, L. J. Hirsch, G. D. Montouris, N. R. Temkin, S. Wiebe, and T. L. Sierzant. 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.

Stein, Phyllis K., Peter P. Domitrovich, Heikki V. Huikuri, Robert E. Kleiger, and Investigators Cast. 2005. Traditional and Nonlinear Heart Rate Variability Are Each Independently Associated with Mortality after Myocardial Infarction. Journal of Cardiovascular Electrophysiology 16 (1): 13-20.

SUDEP Action. 2013. SUDEP Action leads international call for openess. Available from

Surges, R., and J. W. Sander. 2012. Sudden unexpected death in epilepsy: mechanisms, prevalence, and prevention. Curr Opin Neurol 25 (2): 201-7.

Taylor, J. A. 2002. Determination of Sheriff James Taylor, Sheriff of the Sheriffdom of Glasgow and Strathkelvin at Glasgow. Inquiry held under fatal accidents and sudden death inquiry (Scotland) Act 1976 into the death of Colette Marie Findlay.

Teran, F. A., C. A. Massey, and G. B. Richerson. 2014. Serotonin neurons and central respiratory chemoreception: where are we now? Prog Brain Res 209: 207-33.

Thom, Maria. 2007. The autopsy in sudden unexpected adult death: Epilepsy. Current Diagnostic Pathology 13 (5): 389-400.

Thurman, David J., Dale C. Hesdorffer, and Jacqueline A. French. 2014. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia Jun 5 doi: 10.1111/epi.12666.

Tu, E., R. D. Bagnall, J. Duflou, and C. Semsarian. 2011. Post-mortem review and genetic analysis of sudden unexpected death in epilepsy (SUDEP) cases. Brain Pathol March 2 (2): 201-208.

Tu, E., L. Waterhouse, J. Duflou, R. D. Bagnall, and C. Semsarian. 2011. Genetic analysis of hyperpolarization-activated cyclic nucleotide-gated cation channels in sudden unexpected death in epilepsy cases. Brain Pathol 21 (6): 692-8.

Velagapudi, P., M. Turagam, T. Laurence, and A. Kocheril. 2012. Cardiac Arrhythmias and Sudden Unexpected Death in Epilepsy (SUDEP). Pacing Clin Electrophysiol 35 (3): 363-70.

Waddell, B., K. McColl, C. Turner, A. Norman, A. Coker, K. White, R. Roberts, and C. A. Heath. 2013. Are we discussing SUDEP? A retrospective case note analysis. Seizure 22 (1): 74-76.