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NINDS Workshop: Sudden Unexpected Death in Epilepsy (SUDEP)


Hilton Rockville Hotel and Executive Meeting Center
Rockville, Maryland
November 12–14, 2008

Agenda

Wednesday, November 12

5:00 p.m.–6:00 p.m.
Registration
6:00p.m.–10:00 p.m.
Dinner Meeting

Overview of current state of the knowledge of SUDEP in both animal models and human conditions; overview of issues facing epilepsy patients and their families; organization of the workshop

Welcome and Introductions
Walter Koroshetz and Margaret Jacobs

(1 or 2 slides from each group introducing workshop―5–10 minutes)

Overall Introduction
Clinical Factors
Cardiorespiratory & Autonomic
Genetics
Case Identification
Education Issues Overview
Patient/Family
Prevention

Elson So
Elizabeth Donner
Lawrence Hirsch
Alica Goldman
Nancy Temkin
Jeffrey Buchhalter
Jeanne Donalty
Nina Graves and Tess Sierzant


Thursday, November 13

7:30 a.m.–8:30 a.m.
Registration and Continental Breakfast
8:30 a.m.–5:00 p.m.
Concurrent Sessions: Research and Education

Research Session:
Each session should address the following questions:
  • What is known about SUDEP (basic and clinical)?
  • What do we need to know to prevent SUDEP?
  • What can we learn from other disease areas?
  • Where do we need to go and how do we get there?
8:30 a.m.–10:00 a.m.
Session 1: Clinical Factors
Moderators: Elizabeth Donner and Anne Berg
10:00 a.m.–10:30 a.m.
BREAK
10:30 a.m.–12:30 p.m.
Session 2: Cardiorespiratory and Autonomic Mechanisms
Moderators: Lawrence Hirsch and Martin Samuels
12:30 p.m.–1:30 p.m.
LUNCH
1:30 p.m.–3:00 p.m.
Session 3: Genetics
Moderators: Alica Goldman and Michael Ackerman
3:00 p.m.–3:30 p.m.
BREAK
3:30 p.m.–5:00 p.m.
Session 4: Case Identification
Moderators: Nancy Temkin and Paul Schraeder

Education Session:
Each session should address the following questions:
  • What do we know? Where is there disagreement and why? Can the disagreement be resolved and, if so, what are strategies to do so? If the disagreement cannot be resolved, what do we do about it?
  • What do we need to know to prevent SUDEP?
  • What are the ethical and legal aspects that should be considered?
  • What research should be considered?
8:30 a.m.–10:00 a.m.
Session 1: Focus on Patients and Families
Moderators: Jane Hanna and Nancy Collins

Considerations When Providing Information Regarding SUDEP Ethics:
The Right to Know vs. the Right Not to Know
10:00 a.m.–10:30 a.m.
BREAK
10:30 a.m.–12:30 p.m.
Session 1: Focus on Patients and Families (cont’d)
Moderators: Fran London and Joan Austin

When and How To Educate Families and Patients

When?
  • Assessing readiness to learn
  • How much to give, over what time period
  • Variations due to ethnicity and cultural background
How?
  • How to discuss with families/patients
  • Opening the discussion
  • Available resources and materials
12:30 p.m.–1:30 p.m.
LUNCH
1:30 p.m.–3:00 p.m.
Session 2: Focus on Health Care Professionals
Moderators: Jacquelyn Bainbridge and Andres Kanner

When To Educate Health Care Professionals
  • Barriers to changes in practice
  • Barriers to providing education
  • How to overcome the barriers
3:00 p.m.–3:30 p.m.
BREAK
3:30 p.m.–5:00 p.m.
Session 2: Focus on Health Care Professionals (cont'd)
Moderators: Cynthia Harden and Susan Duncan

How To Educate Health Care Professionals― Guideline Development
  • What do we know now?
  • What else is needed?
  • Who needs to know?
  • How do we reach them?
5:00 p.m.–6:00 p.m.
Chairs meet to discuss what to present on Friday morning

Friday, November 14

7:30 a.m.–8:30 a.m.
Registration and Continental Breakfast
8:30 a.m.–10:00 a.m.
Concurrent Sessions: Research and Education

Session: Prevention
Research Moderators: Nina Graves and Lina Nashef
Education Moderators: Rosemary Panelli and David Thurman
10:00 a.m.–10:30 a.m.
BREAK
10:30 a.m.–1:00 p.m.
Future Directions and Wrap-up (both groups)
Moderators: Workshop Chairs
1:00 p.m.
Adjournment

Last updated August 3, 2011