Preventing Epilepsy Deaths: Clinician Toolkit

About this Toolkit

In 2020, the Epilepsy Foundation SUDEP Summit convened a range of stakeholders committed to ending SUDEP.  The outcome of the Summit was a series of recommendations in the areas of awareness and behavior change, clinical action, basic science, and public health/epidemiology.

In 2021, the Child Neurology Foundation, in partnership with the American Epilepsy Society, Danny Did Foundation, and the Epilepsy Foundation, evaluated previous SUDEP efforts, as well as efforts in different disease spaces to determine what would be the best way to address the recommendations from the SUDEP Summit Behavior Change Task Force.  We researched behavior change science and determined that the best approach was to build an educational toolkit to help providers address epilepsy mortality risk factors with patients. 

In 2022, CNF convened a group of experts in the epilepsy space to collaboratively create the toolkit. This resulting toolkit includes:

  • Assessment and action guide to provide evidence-based risk factors to assess and actions that clinicians, people with epilepsy, or their caregivers can take to reduce the risk of epilepsy-related mortality
  • Empowering conversation guide with information on how to communicate the risk of death effectively, reassure patients, and address barriers to epilepsy management to help improve patient outcomes
  • Patient handout explaining that epilepsy can be life-threatening, but there are things that can be done to decrease the risk and a form highlighting potential risk factors to share with their clinicians

Starting in 2023 this toolkit will be evaluated for its effectiveness in improving outcomes and quality of care for people with epilepsy.  It also evaluates if having these difficult conversations about the risk of epilepsy mortality will change patient and caregiver behavior.  

The support and excitement for this project are phenomenal.  Below is the list of experts in the epilepsy space from the US, Canada, and the UK, that participated in the development and review of the toolkit.  We are also grateful to the organizations that endorse the toolkit.

Partner Organizations
Aicardi Syndrome Foundation
American Academy of Neurology
American Academy of Pediatrics
American Association of Neuroscience Nurses
American Epilepsy Society
BAND Foundation
Cameron Boyce Foundation
Centers for Disease Control and Prevention  
Child Neurology Foundation
CURE Epilepsy
Danny Did Foundation
Dup15q Alliance
Epilepsy Alliance America
Epilepsy Foundation America
Epilepsy Learning Healthcare System
Glut1 Deficiency Foundation
Managing Epilepsy Well Network
National Association of Epilepsy Centers
National Institute of Neurological Disorders and Stroke
Partners Against Mortality in Epilepsy
Pediatric Epilepsy Learning Healthcare System
Pediatric Epilepsy Surgery Alliance
Project 8p
TSC Alliance
Our Project Leads
Lead Adult Epileptologist
Shawna Benard MD, MPH
Assistant Professor of Clinical Neurology
University of Southern California
Lead Pediatric Epileptologist
Daniel Freedman DO
Assistant Professor of Neurology
The University of Texas at Austin Dell Medical School
Our Expert Advisors

Madison Berl PhD, ABPP
Pediatric neuropsychologist/Associate Professor
Children’s National Hospital/George Washington University

Cate Brocker
Senior Director, Programs and Partnerships
Epilepsy Foundation of America

Jeff Buchhalter MD, PhD, FAAN, FAES
Buchhalter Consulting, Health Outcomes Oriented Strategies
Epilepsy Learning Healthcare System, Pediatric Epilepsy Learning
Healthcare System, PAME

Stephanie Charles BSN
Client Services
Epilespy Alliance Louisiana

Bruce Cohen MD, FAAN
NeuroDevelopmental Science Center, Akron Children’s Hospital
Board of Directors, CNF

Beth Dean MPA, MBA
Chief Executive Officer
CURE Epilepsy

Elizabeth Donner MD, MSc
Director, Comprehensive Pediatric Epilepsy Program and Professor of Paediatrics
SickKids and University of Toronto
Co-Chair, Partners Against Mortality in Epilepsy

Stephen Downs MD, MS
Professor of Pediatrics
Wake Forest School of Medicine
CEO Digital Health Solutions, LLC

Mary Duffy MS
Executive Director
Danny Did Foundation

Cam Escoffery PhD, MPH
Rollins School of Public Health

Belicia Espinal
Young Professionals Board
Danny Did Foundation

Pediatric Nurse Practitioner
American Association of Neuroscience Nurses

Kelly Fischbein RN, BSN, CPHQ
Neurology Medical Outcomes, Medical Affairs
UCB Inc.

Tiffany Fisher MD, PhD
Adult Epileptologist
Penn State Hershey
Quality Committee, AAN

Carrie Fitzgerald
Special Education / Preschool Teacher

Daniel Friedman MD, MSc
Professor of Neurology
NYU Grossman School of Medicine
Co-Chair, PAME SUDEP Research and Prevention Committee

William D Gaillard MD
Chief Child Neurology
Children’s National Hospital Washington DC

Lisa Gallipoli
Chief Operating Officer
Epilepsy Alliance America

Rebecca Garcia-Sosa MD
Attending Physician, Neurology and Epilepsy Center
Assistant Professor of Pediatrics (Neurology)
Northwestern University Feinberg School of Medicine
Board of Directors, Danny Did

Lisa Garrity PharmD, SM
Pharmacy Clinical Specialist, Neurology
Cincinnati Children’s Hospital Medical Center

Zachary Grinspan MD, MS
Director of Pediatric Epilepsy
Weill Cornell Medicine
Primary Investigator, Pediatric Epilepsy Learning Healthcare System

Jane Hanna OBE
Chief Executive
SUDEP Action

Marija Hegel
Program Specialist
American Academy of Pediatrics

Susan Herman MD
Director of the Epilepsy Program, Professor in the Department of Neurology
Barrow Neurological Institute
Co-Principal Investigator Epilepsy Learning Healthcare System

Barrett Hope MPH
Senior Manager, Children and Youth with Special Needs Initiatives
American Academy of Pediatrics

Shannon Kindilien PhD
ORISE Fellow
Data Quality Evaluation and Maintenance Work Stream
Case-based Surveillance Operations Team
Division of Health Informatics and Surveillance
Center for Surveillance, Epidemiology, and Laboratory Services
Centers for Disease Control and Prevention (CDC) Division of Population Health

Lauren Knepper MSN, RN
President, Associate Board
Danny Did Foundation

Rosemarie Kobou MPH, MAPP
Epilepsy Program Lead
Centers for Disease Control and Prevention (CDC) Division of Population Health
CDC Managing Epilepsy Well Network

Sarah Korba MA
Board Member
Epilepsy Alliance America

Alison Kukla MPH
Senior Manager, Programs and Partnerships
Epilepsy Foundation of America
Member, PAME Governance Committee

Gardiner Lapham BSN, MPH
Partners Against Mortality in Epilepsy
Trustee, BAND Foundation

Monica Lemmon MD
Associate Professor of Pediatrics; Associate Dean for Scientific Integrity
Duke University School of Medicine

Lucretia Long CANP F-AES
Clinical Associate Professor of Neurology
The Ohio State University
Project Management Expert, UK Epilepsy Deaths Register – SUDEP Action

Marli Mesibov
Lead Content Strategist
Verily Life Sciences

John Millichap MD
Adjunct Associate Professor of Neurology
Northwestern University Feinberg School of Medicine
Board of Directors, Child Neurology Foundation

Eileen Murray MM, CAE
Executive Director
American Epilepsy Society

Ashley Pounders MSN ,FNP-C
Director, Medical Affairs
TSC Alliance

Kari Rosbeck
President and CEO
TSC Alliance

Rohit Shankar MBE, FRCPsych
Professor of Neuropsychiatry, Director of Cornwall Intellectual Disability Equitable Research
University of Plymouth Medical School

Tom Stanton MS
Danny Did Foundation
Planning Committee, PAME; Advisory Committee, National Coordinating Center for Epilepsy

Shawna Strickland PhD, CAE, RRT
Associate Executive Director, Programs
American Epilepsy Society

William Trescher MD
Penn State Health Children’s Hospital
Member of the Epilepsy Learning Healthcare System (ELHS)

Megan Turner BS
Danny Did Foundation

Vicky Whittemore PhD
Program Director
National Institute of Neurological Disorders and Stroke, National Institutes of Health
NINDS Program Officer for Sudden Death in Young Registry; Member of CURE Epilepsy Scientific Advisory Committee; Member of PAME SUDEP Research & Prevention Committee

Cyndi Wright
Program Manager
Child Neurology Foundation


We gratefully acknowledge the Band Foundation and UCB, Inc for their support of this project.