Authors: Kevin D Graber, MD, Jeffrey Buchhalter, MD, PhD, Elson So, MD, Rainer Surges, MD, Detlev Boison, PhD, Franck Kalume, PhD, Cyndi Wright, Brian Gehlbach, MD, Jeff Noebels, MD, PhD, Vicky Whittemore, PhD, Elizabeth J. Donner, MD, MSc, Tom Stanton, MPP, Henry Smithson, MD, Jane Hanna, Masud Seyal, MD, PhD, Philippe Ryvlin, MD, PhD The third biannual Partners Against Mortality in Epilepsy (PAME) conference was held in Alexandria, VA from June 23-26, 2016. This was an intimate meeting of clinical and basic scientists, clinicians, people affected by Sudden Unexpected Death in Epilepsy Patients (SUDEP) in a loved one, people living with epilepsy and patient advocate organizations. Plenary sessions have been summarized by moderators, including: 1) Mortality in people with epilepsy: epidemiology and surveillance. 2) Mortality in children. 3) What do we know about the factors that predispose certain people to die from a seizure? 4) What are the events that occur during and after a seizure that cause a death in SUDEP? 5) What are the options for prevention now and in the future? 6) Advocacy perspectives: how can we speed up awareness and prevention? 7) Updates and discussion on select programs in mortality research. Breakout sessions allowed for a more focused audience. Those summarized here are: Frequent non-SUDEP causes of mortality in people with epilepsy; Mechanisms of SUDEP; Lessons learned in grief and how to better support families; Future directions for research to impact prevention; and How do we improve SUDEP risk disclosure? While significant progress has been made with review of human mortality in epilepsy and study of animal models, this meeting emphasized the need for: better understandings of the epidemiology of SUDEP, advances in the understandings of mechanisms, continued search for biomarkers and preventative measures, patient education, increased awareness, continued advocacy for patient and family support and research funding.

中文翻译：

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2016 年抗击癫痫死亡率合作伙伴 (PAME) 会议摘要。

作者：Kevin D Graber（医学博士）、Jeffrey Buchhalter（医学博士）、博士、Elson So（医学博士）、Rainer Surges（医学博士）、Detlev Boison（博士）、Franck Kalume（博士）、Cyndi Wright（医学博士）、Brian Gehlbach（医学博士）、Jeff Noebels（医学博士）、哲学博士、 Vicky Whittemore 博士、Elizabeth J. Donner 医学博士、理学硕士、Tom Stanton、MPP、Henry Smithson 医学博士、Jane Hanna、Masud Seyal 医学博士、哲学博士、Philippe Ryvlin 医学博士、博士 第三届两年期合作伙伴抗击癫痫死亡率 (PAME) ）会议于 2016 年 6 月 23 日至 26 日在弗吉尼亚州亚历山大举行。这是一次亲密的会议，与会者包括临床和基础科学家、临床医生、受癫痫患者意外死亡 (SUDEP) 影响的亲人、癫痫患者和患者倡导组织。主持人对全体会议进行了总结，包括： 1) 癫痫患者的死亡率：流行病学和监测。2）儿童死亡率。3) 对于导致某些人死于癫痫发作的因素，我们了解多少？4) 癫痫发作期间和之后发生的哪些事件会导致 SUDEP 死亡？5）现在和将来有哪些预防选择？6) 倡导视角：我们如何才能加快认识和预防？7) 死亡率研究选定项目的更新和讨论。分组会议让观众更加集中。这里总结的是： 癫痫患者常见的非 SUDEP 死亡原因；SUDEP的机制；从悲伤中吸取的教训以及如何更好地支持家庭；影响预防的研究的未来方向；以及我们如何改进 SUDEP 风险披露？虽然在回顾人类癫痫死亡率和动物模型研究方面取得了重大进展，但本次会议强调需要：更好地了解 SUDEP 的流行病学、加深对机制的理解、继续寻找生物标志物和预防措施、患者教育、提高认识、持续倡导患者和家人的支持以及研究经费。