SUDEP Prevention

BAND actively supports efforts to understand and prevent Sudden Unexpected Death in Epilepsy (SUDEP).  By partnering with impacted families, researchers and clinicians we raise awareness of the increased risk of sudden death from epilepsy and drive efforts that improve care and unravel the mysteries of this devastating phenomenon. 

Grants in Focus: United States

Project: Expanding Collaborative Efforts to Understand and Prevent Epilepsy Mortality
Grantee: PAME
Summary: Partners Against Mortality in Epilepsy (PAME) is a network of diverse organizations and individuals who seek to share information, spark innovation, and drive progress in the fight against epilepsy-related mortality. PAME began in 2012 as bi-annual meeting focused on knowledge sharing and awareness among people affected and/or bereaved by epilepsy, health care providers, researchers and death investigators. As a result of coordinating 5 successful meetings PAME has grown a strong and diverse community that is eager to see this collaborative expand its influence. This project will allow PAME to deepen its impact through educational offerings and various other efforts that promote coordination to drive research and prevention.

Project: SUDEP & Epilepsy Mortality Education Toolkit
Grantee: Child Neurology Foundation
Summary: The Child Neurology Foundation (CNF) will spearhead a community process to develop and implement a SUDEP and Epilepsy Morality Intervention. The goal is to drive measurable behavior change in physicians and people with epilepsy by increasing their awareness of the risk for epilepsy mortality and SUDEP, and what can be done to decrease risk and save lives.  CNF, in collaboration with leading epilepsy experts and organizations, will create a multi-pronged and multi-media tool kit focused on increasing provider discussion of SUDEP and mortality risk.  It is hoped that such a collaborative process will lead to broad community endorsement of educational materials as well as evaluation of the intervention on health outcomes. 

Project: Pediatric Epilepsy Mortality Initiative (PEMI)
Grantee: Weill Cornell Medicine
Summary: The Pediatric Epilepsy Learning Healthcare System (PELHS) is a consortium of 20+ academic pediatric epilepsy centers in the United States. The PELHS mission is to reduce seizures and their consequences for children with epilepsy through cycles of health data collection and analysis, dissemination of new evidence, and practice change.  The PELHS Pediatric Epilepsy Mortality Initiative will identify, review, and classify deaths among children with epilepsy to identify potential interventions that would prevent those deaths. The Initiative will also measure and track adoption of four clinical interventions that may reduce pediatric epilepsy deaths: SUDEP counseling (including counseling about nocturnal supervision), referral of children with refractory epilepsy to comprehensive care, prescription of rescue medication, and anxiety / depression screening (i.e., to prevent suicide).

Project: Having the conversation: A SUDEP communication guide
Grantee: DUKE University School of Medicine
Summary: It is well documented that people with epilepsy and their families desire early, transparent communication about SUDEP. Yet clinicians do not regularly counsel people with epilepsy about this risk, often because it is a “difficult conversation” to initiate.  This project will research barriers to early and ongoing communication about SUDEP risk and will develop an evidence-based clinician-facing conversation guide to facilitate conversations about SUDEP risk. It will also develop a patient/parent-facing question prompt list to guide SUDEP conversations with their providers.

Project: SUDEP Data Standardization Project
Grantee: CURE Epilepsy
Summary: CURE Epilepsy seeks to lead the SUDEP research community in establishing common language and terminology for use in the collection and reporting of SUDEP data.  The current lack of data standardization often makes studies difficult to interpret and compare, and decreases the overall collective impact of preclinical SUDEP studies. Standardizing data collection elements will allow data to be compared, evaluated, or aggregated so that meta-analysis can be conducted on larger data sets.  Ultimately, the goal is to accelerate translation of preclinical SUDEP research to impact the lives of those at risk for SUDEP.

Project: UVA Health
Grantee: UVA Health
Summary: At UVA, researchers in the Department of Neurology aim to understand the neuropathological consequences of seizures or epileptic activity in patients with dementia compared to patients with dementia without seizures. They hypothesize that there is a measurable difference that can be detected early in the disease course between patients with dementia who develop epilepsy and those that do not. If they are correct and can identify this difference, UVA neurologists will be able to take the necessary steps to develop treatments and allow patients to live longer with a higher quality of life.

Resources

Research and toolkits supported by the BAND Foundation:

Duke University
A question prompt list for sudden unexpected death in epilepsy
Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective

CNF
Preventing Epilepsy Deaths Toolkit

Scientific Meetings

BAND funds scientific meetings that expand our understanding of epilepsy’s basic mechanisms and of how to improve clinical care and treatment.  Select examples include:

AES Sleep & Epilepsy Workshop:
In May 2019, the American Epilepsy Society (AES) hosted a Sleep and Epilepsy Workshop that included an expert multidisciplinary panel.  This group discussed the intersection of these issues, identified gaps of knowledge, and began the process of identifying benchmarks for concentrated research in the basic, translational, and clinical sciences.  These papers summarize the panel’s findings:

Workshop Summary
Section 1: Decreasing Seizures – Improving Sleep and Seizures, Themes for Future Research
Section 2: Comorbidities: Sleep Related Comorbidities of Epilepsy
Section 3: Mortality: Sleep, Night, and SUDEP

Grantee: American Epilepsy Society
Meeting: Partners Against Mortality in Epilepsy (PAME) is a biennial conference that brings together professionals (clinicians, basic science researchers, and others) with public health officials and people who have epilepsy and their families/caregivers. The purpose is to increase understanding of mortality in epilepsy–particularly Sudden Unexpected Death in Epilepsy (SUDEP).

Grantee: The Alzheimer’s Association
Meeting: Epilepsy and Alzheimer’s Disease – Overlapping Mechanisms and Therapeutic Opportunities, September 2017

Grantee: Children’s National Medical Center
Meeting: Using Electronic Health Records to Advance Epilepsy Care, January 2017
This meeting brought together experts from a number of pediatric epilepsy practices to consider how to use the Electronic Health Record Systems to improve the overall efficiency and quality of care of patients with epilepsy.  A summary of the meeting will be published in the journal Neurology in February 2019.