Overview

The first Partners Against Mortality in Epilepsy (PAME) conference took place in Evanston, Illinois, on June 22-24, 2012. The meeting focused on Sudden Unexpected Death in Epilepsy (SUDEP) as a major source of mortality resulting from seizures. The ‘partnership’ that organized this conference grew out of the collaboration known as the SUDEP Coalition. The partners that served on the Organizing Committee included the American Epilepsy Society, Centers for Disease Control, Citizens United for Epilepsy Research, Epilepsy Foundation, Epilepsy Therapy Project, National Institutes of Neurological Disorders & Stroke, and SUDEP Aware. Conference Summary

 

Neurology Primer Session for Non-Scientists: Overview of Concepts and Terminology to be Used in PAME Conference Sessions

Moderators:

  • Jeffrey Buchhalter, M.D., Ph.D.
  • Lawrence J. Hirsch, M.D.
  • Mark Stevenson, FACHE, CHIE
  • George Richerson, M.D., Ph.D.

Group Discussion: Topic A: Family Welcome: Connect with Other Family Members and Learn How to Make the Most of PAME 2014

Moderators:

  • Paul Scribner
  • Linda Coughlin Brooks, RN, B.S.N., CT

Plenary Session: Overview of Mortality in Epilepsy Including SUDEP

Moderator: David Thurman, M.D., M.P.H

Overview of Short- and Long-Term Mortality in Epilepsy

Moderator: David Thurman, M.D., M.P.H.

Occurrence and Risk Factors for Accidents in Epilepsy

Moderator: Allen Hauser, M.D.

Causes of Epilepsy as Causes of Death in Epilepsy

Moderator: Josemir W. Sander, M.D., Ph.D., FRCP

SUDEP: New Definition

Moderator: Dale C. Hesdorffer, Ph.D.

Conclusion and Q & A

Moderator: David Thurman, M.D., M.P.H.

Plenary Session: SUDEP Mechanisms: Respiratory

Moderators:

  • George Richerson, M.D., Ph.D.
  • Lisa Bateman, M.D.

Introduction

Moderator: George Richerson, M.D., Ph.D.

Human Peri-ictal Physiology: Respiratory

Moderator: Lisa Bateman, M.D.

Animal Models and Control of Breathing/SIDS

Moderator: George Richerson, M.D., Ph.D.

Respiratory Rhythm Generation and Long QT Genes

Moderator: Dan Mulkey, Ph.D.

Adenosine in Brainstem

Moderator: Detlev Boison, Ph.D.

Abstract Winner Presentation: Characterization of Respiratory Arrest-Susceptible DBA/1 TPH2-ChR2 Mice

Moderator: Hua-Jun Feng, M.D., Ph.D.

Perspectives and Q & A

Moderators:

  • George Richerson, M.D.
  • Lisa Bateman, M.D.

Plenary Session: Epilepsy Mortality Surveillance and Provider Guidelines

Moderator: Orrin Devinsky, M.D.

Story of Loved One

Moderator: Amy Haugen

Introduction

Moderator: Orrin Devinsky, M.D.

Death Investigation in Epilepsy: Examination and Certification

Moderator: Lindsey Thomas, M.D.

SUDEP Registry Updates: NASR and SDYR

Moderator: Vicky Whittemore, Ph.D.

AAN SUDEP Guidelines

Moderator: Cynthia L. Harden, M.D.

State SUDEP Advocacy: Legislative and Non-Legislative Efforts

Moderator: Cyndi Wright

Conclusion and Q&A

Plenary Session: SUDEP Mechanisms: Sleep & Arousal Systems

Moderators:

  • Gordon Buchanan, M.D., Ph.D.
  • Hal Blumenfeld, M.D., Ph.D.

Introduction

Moderator: Gordon Buchanan, M.D., Ph.D.

Human Peri-ictal Physiology: Central Shutdown and Arousal Systems

Moderator: Hal Blumenfeld, M.D., Ph.D.

Human & Mouse Mechanisms of Brainstem Invasion

Moderator: Brian Dlouhy, M.D.

Serotonin and Post-ictal Breathing and Arousal / Sleep

Moderator: Gordon Buchanan, M.D., Ph.D.

Adenosine: Sleep and Post-ictal Respiratory Arrest

Moderator: Carl Faingold, M.D.

Abstract Winner Presentation: Association of Prone Position with Sudden Unexpected Death in Epilepsy

Moderator: James Tao, M.D., Ph.D.

Perspectives and Q & A

Moderator: Hal Blumenfeld, M.D., Ph.D.

Group Discussion Topic A: In-Depth Scientific Discussion on Role of Sleep and Arousal Mechanisms

Moderators:

  • George Richerson, M.D., Ph.D.
  • Hal Blumenfeld, M.D., Ph.D.

Group Discussion Topic B: Q & A for Families and Advocates on Friday’s Sessions

Moderators:

  • Jeffrey Buchhalter, M.D., Ph.D.
  • Orrin Devinsky, M.D.
  • Dale Hesdorffer, Ph.D.

Group Discussion Topic A: In-Depth Scientific Discussion on Future Direction for Respiratory Research

Moderators: 

  • Lisa M. Bateman, M.D.
  • George Richerson, M.D., Ph.D.

Group Discussion Topic B: Ways to Identify SUDEP Cases: How Clinicians and Family Members Can Work Together

Moderators:

  • Dale Hesdorffer, Ph.D.
  • Orrin Devinsky, M.D.
  • Lindsey Thomas, M.D.

Plenary Session: Non-SUDEP Mortality in Epilepsy

Moderator: Dale Hesdorffer, Ph.D.

Story of Loved One

Moderator: Ginny Miller

Introduction

Moderator: Dale Hesdorffer, Ph.D.

Mortality in Status and Acute Symptomatic Seizures

Moderator: Dale Hesdorffer, Ph.D

Occurrence and Risk Factors for Completed Suicide in Epilepsy

Moderator: Nathalie Jetté, M.D., FRCPC

Non-Adherence to Antiepileptic Drugs and the Risk for Death in Epilepsy

Moderator: Daniel Friedman, M.D.

Cardiovascular Disease and Epilepsy/AEDs

Moderator: Scott Mintzer, M.D.

Conclusions and Q & A

Moderator: Dale Hesdorffer, Ph.D

Plenary Session: SUDEP Mechanisms: Automatic and Cardiac

Moderators:

  • Jeffrey Noebels, M.D., Ph.D.
  • Jeffrey Britton, M.D.

Introduction

Moderator: Jeffrey Noebels, M.D., Ph.D.

Autonomic Effects of Seizures and SUDEP: Neuroanatomic Considerations

Moderator: Jeffrey Britton, M.D.

Autonomic Control

Moderator: Franck K. Kalume, Ph.D

Neural-cardiac Mechanisms of SCN1A-linked Dravet Syndrome and SUDEP

Moderator: Lori Isom, Ph.D.

The Spectrum of Cardiac Complications in Epilepsy

Moderator: Rainer Surges

Abstract Winner Presentation: Cardiac Risk Factors and Potential Cardioprotective Therapy in a Model of Acquired Epilepsy

Moderator: Yi Chen Lai, M.D.

Perspective Q & A

Moderators:

  • Jeffrey Noebels, M.D., Ph.D.
  • Jeffrey Britton, M.D.

Plenary Session: Epilepsy and Grief

Moderator: Jeanne Donalty

Story of Loved One

Moderator: Lisa Riley

From Normal to Pathological Grief: Recognition of the Pathogenic Mechanisms

Moderator: Andres M. Kanner, M.D.

Grief Counseling or Not, Navigating the Grief Journey

Moderator: Linda Coughlin Brooks, RN, B.S.N., CT

Making a Grief Support Referral: Resources and Recommendations

Moderator: Paul Scribner

Panel Discussion and Q & A

Moderator: Jeanne Donalty

Plenary Session: SUDEP Mechanisms: Genetics

Moderators:

  • Alica Goldman, M.D., Ph.D.
  • Daniel Lowenstein, M.D.

Introduction

Moderator: Alica Goldman, M.D., Ph.D.

Role of Human Genetics in SUDEP

Moderator: Alica Goldman, M.D., Ph.D.

Lessons from EPGP and Epi4K

Moderator: Daniel Lowenstein, M.D

Isolating and Validating SUDEP Genes in Mouse Models

Moderator: Jeffrey Noebels, M.D., Ph.D.

Sodium Channel Mutations and SUDEP

Moderator: Miriam Meissler, Ph.D.

Abstract Winner Presentation: Modeling SUDEP and Stress in Genetically Epilepsy Prone Rats (GEPR-9s)

Moderator: Srinivasa Prasad Kommajosula

Perspectives and Q & A

Moderators:

  • Alica Goldman, M.D., Ph.D.
  • Daniel Lowenstein, M.D.

 

Plenary Session: How Organizations Are Promoting Understanding of Epilepsy Mortality

Moderators:

  • Jeffrey Buchhalter, M.D., Ph.D., FANN
  • Cyndi Wright

 

Group Discussion Topic A: In-Depth Scientific Discussion on Mechanisms: Autonomic and Cardiac

Moderators:

  • Jeffrey Noebels, M.D., Ph.D.
  • Barbara Kroner, Ph.D.

 

Group Discussion Topic B: Q & A for Families and Advocates on Saturday’s Sessions

Moderators:

  • Dale Hesdorffer, Ph.D.
  • Lawrence J. Hirsch, M.D.
  • Paul Scribner
  • Alicia Goldman, M.D., Ph.D.

 

Group Discussion Topic A: In-Depth Scientific Discussion on Genetics

Moderators:

  • Alicia Goldman, M.D., Ph.D.
  • Jeffrey Noebels, M.D., Ph.D.

 

Group Discussion Topic B: How Clinicians and Family Members Can Work Together to Build More Understanding, Awareness and Reduce Epilepsy Mortality

Moderators:

  • Cyndi Wright
  • Dale Hesdorffer, Ph.D.

 

Plenary Session: SUDEP – Devices, Treatment & Prevention

Story of a Loved One

  • Speakers: Dennis and Kari Knapp

Introduction

  • Speaker: Elizabeth Donner, M.D., FRCPC

Overview of Surgical and Pharmacological Treatments in SUDEP Prevention

  • Speaker: Elizabeth Donner, M.D., FRCPC

Nocturnal Seizures, Stimulation and Supervision

  • Speaker: Lisa M. Bateman, M.D.

The Accuracy and Clinical Utility of Devices

  • Speaker: Daniel Friedman, M.D.

Monitoring Devices: What to Know and What to Ask

  • Speaker: Tom Stanton

The Role of Self Management in Managing Epilepsy and Reducing Complications

  • Speaker: Martha Sajatovic

SUDEP Prevention from a Public Health Perspective: Changing Behavior

  • Speaker: Tanya Spruill, Ph.D.

Abstract Winner Presentation: Advance Warning of Epileptic Seizure Based on Complexity Measures of
Cerebral Blood Flow

  • Speaker: Senay Imam

Panel Discussion and Q & A

  • Moderator: Elizabeth Donner, M.D., FRCPC

 

Plenary Session: Final Thoughts & Closing Remarks

Moderators:

  • Jeffrey Buchhalter, M.D., Ph.D., FANN
  • Gardiner Lapham, RN, M.P.H.