Overview

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), a loved one, people living with epilepsy, and patient advocate organizations. Conference Summary

Plenary 1: Mortality in People with Epilepsy – Epidemiology and Surveillance

Moderator: Vicky Whittemore, PhD, NINDS

Panel Discussion: 

  • Dale Hesdorffer, PhD
  • Niu Tian, MD, PhD
  • Margaret Warner, PhD
  • Heather Macleod, MS CGC

Plenary 2: Mortality in Children

Moderator: Elizabeth Donner, MD, FRCP(C)

Parent Speaker: Shannon Bursick, MS

Panel Discussion: 

  • Anne Berg, PhD
  • Sanjeev Kothare, MD
  • Laura Crandall

Plenary 3: What Do We Know about the Factors that Predispose Certain People to Die from a Seizure?

Moderator:  Rainer Surges, MD & Elson So, MD

Parent Speaker: Trish Barnes

Panel Discussion: 

  • Brian Moseley, MD
  • Alica Goldman, MD, PhD
  • Philippe Ryvlin, MD, PhD
  • James Tao, MD, PhD
  • Ed Faught, MD
  • Elaine Wirrell, MD

Breakout 1: Gene Analysis and Discovery in SUDEP

Moderator:  Tracy Dixon-Salazar, PhD

Panel Discussion: 

  • Vicky Whittemore, PhD
  • David Goldstein, PhD
  • Tracy Dixon-Salazar, PhD

Breakout 2: Improving Mortality Surveillance and Case Ascertainment

Moderator: Daniel Friedman, MD,

Panel Discussion: 

  • Jennifer Murphy
  • Laura Crandall
  • Heather MacLeod, MS, CGC

Breakout 3: Frequent Non-SUDEP Causes of Mortality in People with Epilepsy

Moderator:  Rainer Surges, MD & Elson So, MD

Parent Speaker: Trish Barnes

Panel Discussion: 

  • Orrin Devinsky. MD
  • Stephan Schuele, MD
  • Elson So, MD

Plenary 4: What Are the Events that Occur During and After a Seizure that Cause a death in SUDEP?

Moderator: Philippe Ryvlin, MD, PhD & Masud Seyal, MD, PhD,

Panel Discussion: 

  • Philippe Ryvlin, MD, PhD
  • Roland Thijs, MD
  • George Richerson, MD, PhD
  • Jeff Noebels, MD, PhD
  • Samden Lhatoo, MD
  • Gordon Buchanan, MD, PhD

Breakout 4: Mechanisms of SUDEP

Moderator: Detlev Boison, PhD & Franck Kalume, PhD

Panel Discussion: 

  • Masud Seyal, MD, PhD
  • Brian Dlouhy, MD
  • Helen Scharfman, PhD
  • Greg Funk, PhD
  • Hal Blumenfeld, MD, PhD
  • Chen Liu, PhD

Breakout 5: Lessons Learned in Grief and How to Better Support Families

Moderator: Cyndi Wright

Panel Discussion: 

  • Rajesh Ramachandran Nair, MD
  • Henry Smithson, MD
  • Karen Osland
  • Rosemary Panelli, MPH, PhD
  • Linda Coughlin Brooks, RN, BSN, CT
  • Jennifer Murphy, MS

Plenary 5: Prevention – What Are the Options for Prevention Now and in the Future?

Moderators: Tom Stanton, MPP & Henry Smithson, MD

Family Speaker: Margaret Storey

Panel Discussion:

  • Tobias Loddenkemper, MD
  • Jane Hanna
  • Jeff Buchhalter, MD, PhD, FAAN
  • Barbara Jobst, MD

Breakout 6: Future Directions for Research to Impact Prevention

Moderators: Brian Gehlbach, MD, & Jeff Noebels, MD, PhD

Panel Discussion:

  • Susanne Mueller, MD
  • Stephan Schuele, MD
  • Lisa Bateman, MD
  • Doug Nordli, MD
  • Alica Goldman, MD, PhD

Breakout 7: How Do We Improve SUDEP Risk Disclosure?

Moderator:  Henry Smithson, MD

Plenary 6: Advocacy Perspectives: How Can We Speed Up Awareness and Prevention?

Moderator: Jane Hanna

Panelists:

  • Mark Stevenson
  • Karen Osland
  • Cyndi Wright
  • Rosemary Panelli, MPH, PhD
  • Samuel Wiebe, MSc, MD, FRCPC

Plenary 7: Updates and Discussion on Select Programs in Mortality Research

Moderator: Maggie Moore, MPH

Panelists:

  • Samden Lhatoo, MD
  • Brandy Fureman, PhD
  • Tracy Dixon-Salazar, PhD
  • Samuel Wiebe, MSc, MD, FRCPC