Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors
Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society
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Article Information
- Received June 24, 2016
- Accepted in final form November 2, 2016
- First Published April 24, 2017.
Author Disclosures
- Cynthia Harden, MD,
- Torbjörn Tomson, MD, PhD,
- David Gloss, MD, MPH&TM,
- Jeffrey Buchhalter, MD, PhD,
- J. Helen Cross, MB, ChB, PhD,
- Elizabeth Donner, MD,
- Jacqueline A. French, MD,
- Anthony Gil-Nagel, MD, PhD,
- Dale C. Hesdorffer, PhD,
- W. Henry Smithson, MB, ChB, MD,
- Mark C. Spitz, MD,
- Thaddeus S. Walczak, MD,
- Josemir W. Sander, MD, PhD, FRCP and
- Philippe Ryvlin, MD, PhD
- Cynthia Harden, MD,
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- Torbjörn Tomson, MD, PhD,
UCB Pharma and Eisai, honorarium to my department
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(1) UCB, speaker honorarium (paid to department); (2) Eisai, Inc., speaker honorarium (paid to department)
(1) Epilepsia, Associate Editor, 2008-2013; (2) Epilepsy Research, Editorial Board, 2007-2015; (3) Epileptic Disorders, Associate Editor, 2013-present
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As chair of the central project commission of EURAP, an international antiepileptic drugs and pregnancy registry, I have on behalf of the project received research grants from Bial, Eisai, GlaxoSmithKline, Novartis, and UCB annually the past two years GlaxoSmithKline research support for case-control study of SUDEP
(1) ALF (Stockholm County Council) 2009-2016
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(1) CURE, 2010, 2015
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- David Gloss, MD, MPH&TM,
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Neurology, LOE Review Team
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(1) Neurology for the Specialty Boards, Lippincott Williams and Wilkins, 2006
(1) Charleston Area Medical Center, Charleston, WV 25311
(1) I am an Evidence-based medicine consultant for the American Academy of Neurology
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- Jeffrey Buchhalter, MD, PhD,
Observational Safety Monitoring Board- NIH, Benign Epilepsy of Childhood with Central Temporal Spikes DSMB- NINDS, Established Status Epilepticus Therapy Trial Charlie Foundation Scientific Advisory Board IDIC 15 Scientific Advisory Board
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AAN, webinar series,honoraria AAN, course director, honoraria AAN, Medical Economics & Management Committee AAN, Practice Committee AAN, Child Neurology Quality Measures Work Group Eisai Ltd, honorarium for webinar series, speaking, consulting Lundbeck, honorarium for speaking, consulting Upsher-Smith Labs, honorarium for consulting
Clinical Neurology News, editorial advisory board, 2010-15
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Lundbeck Inc., Eisai Ltd., UCB, and Upsher-Smith
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Alberta Health Services- CMO Quality Improvement grant, principle investigator, 1 year
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- J. Helen Cross, MB, ChB, PhD,
I have sat on scientific advisory boards for Eisai,GSK Zogenix, Sanofi, Shire, Takeda and UCB for which remuneration has been paid to my department
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J Helen Cross is on the Editorial Board for Epilepsy Research
I am part of a submission for patent for Betashot (Vitaflo); a C10 compund developed for nutritional purposes
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She works as Clinical Advisor to the National Children?s Epilepsy Surgery Service
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Participating in clinical trials for GW Pharma, Zogenix, Vitaflo, for which remuneration is made to my department
1. National Institute for Health and Research Senior Investigator 2016-2020 2. Research grant funding from National Institute for Health and Research 3. European Union FP7
Holds an endowed Chair through the University College, London
1. Action Medical Research 2. SPARKS 3. Charles Wolfson Foundation
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- Elizabeth Donner, MD,
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Biocodex, honoraria
Editorial Board, Epilepsia Open
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Ontario Brain Institute, EpLink Grant PI, 2013-2018
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CURE, 2009 Dravet Canada, 2016
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- Jacqueline A. French, MD,
On the scientific advisory board or consultant for Epilepsy Foundation, Acorda, Alexza, Anavex, BioPharm Solutions, Concert, Eisai, Georgia Regents University, GW Pharma, Marathon, Marinus, Neurelis, Novartis, Pfizer, Pfizer-Neusentis, Pronutria, Roivant, Sage, SciFluor, SK Life Sciences, Takeda, UCB Inc., Ultragenyx, Upsher Smith, Xenon Pharmaceuticals, Zynerba Epilepsy Study Consortium,
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Paid travel to present findings at scientific meetings, present at investigators meetings attend advisory boards or give lectures from Acorda, Alexza, Biogen, UCB, Eisai, Inc., Johnson and Johnson, Glaxo Smith-Kline, Marinus, SK Corporation, Upsher-Smith Laboratories, Inc., Novartis, Pfizer Inc, LCGH, Takeda, Supernus,Sage Epilepsy Foundation, Zynerba,Zogenix
2) Lancet Neurology,Editorial Board, 2 years 3) Neurology Today, Editorial board 4) Epilepsy Currents, Editorial Board
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President, Epilepsy Study Consortium, that recieves money from multiple pharmaceutical companies. I consult for a number of companies, on behalf of the Epilepsy Study consortium. A fixed 30% of my NYU salary is paid by the study consortium, and some of this money may come from consulting fees. Companies involved include Acorda,Adamas Alexza, Anavex, BioPharm Solutions, Biogen, Concert, Eisai, Georgia Regents University, GW Pharma,Glaxo Smith-Kline, Marathon, Marinus, Neurelis, Novartis, Pfizer, Pfizer-Neusentis, Pronutria, Roivant, Sage, SciFluor, SK Life Sciences, Takeda, UCB Inc., Ultragenyx, Upsher Smith, Xenon Pharmaceuticals, Zynerba, Zogenix
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1)Alexza 2) Adamas 3)Acorda 4)LCGH 5) Eisai Medical Research 6)Lundbeck 7) Pfizer 8) SK life sciences 9) Sunovion 10) UCB 11 ) Upsher-Smith
NIH 1 R01 NS053998-01A1, Coinvestigator, 2007-2011
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1) Epilepsy Foundation 2) Epilepsy Research Foundation 3) Epilepsy Study Consortium
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- Anthony Gil-Nagel, MD, PhD,
(1) Bial (2) Eisai (3) UCB Pharma
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(1) Bial (2) Eisai (3) UCB Pharma
(1) Epileptic Disorders (2) Seizure (3) Neurolog?a (4) Frontiers in Neurology
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Handbook of Neurological Therapy, Oxford University Press, Published in 2015
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(1) Bial (2) Eisai (3) UCB Pharma
(1) Bial (2) Eisai (3) UCB Pharma
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Hospital Ruber Internacional, Madrid, Spain. Video-EEG monitoring 40% of time since 1998
Bial
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(1) Fundaci?n INCE, Madrid, Spain (2) Fundaci?n GMP
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- Dale C. Hesdorffer, PhD,
(1) Commercial entity: Acorda, Upsher Smith, Cyberonics (2) Wiley Epilepsia Associate Editor
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Acorda, Upsher Smith: Covered travel and hotel for Advisory Board meetings International League Against Epilepsy: Funding to attend a meeting
Associate Editor, Epilepsia 2013-present Editorial Board, Epilepsy and Behavior 2011-present;
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Mount Sinai Medical Center, Injury prevention center grant, paid advisor
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1. CDC, U01 DP006089 PI of Columbia subcontract 2015-2018 2. NINDS, NS04320, Co-I (PI of Columbia subcontract), 2003- 2018; 3. NINDS, NS078419, Co-I, 2012-2015 4. NINDS, NS078419, Co-I 2012-2016 5. PCORI, PPRN-1306-045777, Co-PI 2014-2018 6. FACES, PI of subcontract 2015-2016 7. The Epilepsy Study Consortium. PI of subcontract 2013- 2018
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- W. Henry Smithson, MB, ChB, MD,
SUDEP Action non-profit entity
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ABC of Epilepsy Wiley pubs 2012
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- Mark C. Spitz, MD,
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- Thaddeus S. Walczak, MD,
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SUDEP adjudication committee Neuropace. Reviewed all deaths occurring during followup of patients entered in pivotal studies of Neuropace RNS device to determine whether the cases met criteria for SUDEP or not. $1000 per year given to practice in first several years of participation; I am not sure whether this continued after I joined a new practice in 2013.
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- Josemir W. Sander, MD, PhD, FRCP and
1) UCB Pharma - membership of Advisory Board 2) Eisai - membership of Advisory Board
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1) Lancet Neurology - member of Editorial Board
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1) UCB Pharma - membership of Speakers' Bureau 2) Teva - membership of Speakers' Bureau 3) Lundbeck - membership of Speakers' Bureau
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1) UCB Pharma - research grant to my department 2) GSK - research grant to my department 3) Eisai - research grant to my department
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1) Nationaal Epilepsie Fonds Nederland Projectnumber: 10-07. PI, 2010 ? 2013
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- Philippe Ryvlin, MD, PhD
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UCB pharma: Funding for travel and speaker honoraria Eisai: Funding for travel and speaker honoraria Cyberonics: Funding for travel and speaker honoraria
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- From the Department of Neurology (C.H.), Mount Sinai Health System, New York, NY; Department of Clinical Neuroscience (T.T.), Karolinska Institutet, Stockholm, Sweden; Department of Neurology (D.G.), CAMC Physicians, Charleston, WV; Departments of Pediatrics and Clinical Neurosciences (J.B.), Alberta Children's Hospital, University of Calgary, Canada; Department of Clinical Neurosciences, Institute of Child Health (J.H.C.), and Institute of Neurology (J.W.S.), University College London; Great Ormond Street Hospital for Children NHS Foundation Trust (J.H.C.), London, UK; Department of Paediatrics (E.D.), Division of Neurology, The Hospital for Sick Children, University of Toronto, Canada; Department of Neurology (J.A.F.), New York University Langone Comprehensive Epilepsy Center, New York; Department of Neurology (A.G.-N.), Hospital Ruber Internacional, Madrid, Spain; Gertrude H. Sergievsky Center and Department of Epidemiology (D.C.H.), Columbia University Medical Center, New York, NY; Department of General Practice (W.H.S.), University College Cork, Ireland; Anschutz Outpatient Pavilion (M.C.S.), University of Colorado Health, Aurora; Neurology Clinic (T.S.W.), University of Minnesota, Minneapolis; Stichting Epilepsie Instellingen Nederland (SEIN) (J.W.S.), Heemstede, the Netherlands; and the Department of Clinical Neurosciences (P.R.), CHUV, Lausanne, Switzerland.
- Correspondence to American Academy of Neurology: guidelines{at}aan.com
Article usage
Cited By...
Disputes & Debates: Rapid online correspondence
- Author response: Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Ep
- Cynthia Harden, Neurologist, Mount Sinai Beth Israel Hospital
Submitted September 18, 2019 - Reader response: Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Ep
- Puchit Sukphulloprat, Neurologist, Thammasat University hospital , Pathumthani, Thailand
Submitted July 29, 2019 - A community response: Advocates embrace new AAN/AES SUDEP guideline
- Tom Stanton, Danny Did Foundation, tfstanton@dannydid.org
- Robin Harding, Phil Gattone, Daniel Friedman, Angela Geiger, Orrin Devinsky, Kari Luther Rosbeck, Vanessa Vogel-Farley, Mary Anne Meskis, Alison Singer, Amy Brin Miller, Ilene Miller
Submitted July 20, 2017
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