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Sudden Unexpected Death in Epilepsy

CURE is the leading private funder of Sudden Unexpected Death in Epilepsy (SUDEP) research, pioneering the focus on SUDEP since 2002.

About the Program

Sudden Unexpected Death in Epilepsy (SUDEP), which occurs when a seemingly healthy person with epilepsy dies for no known obvious reason, is perhaps the most devastating possible consequence of epilepsy. SUDEP can happen to anyone with epilepsy, although certain individuals are at a greater risk. While certain steps can be taken to reduce this risk, there is a critical need for continued SUDEP research to understand the underlying mechanisms in order to create a preventative treatment or “cure”.

CURE has been an integral part in this effort by launching a first-of-its-kind research program dedicated to SUDEP in 2004, funding our first grant to Carl L. Faingold, PhD. Since then, CURE has continued to lead efforts to create breakthroughs – for example, partnering with NINDS to host the first-ever scientific SUDEP meeting in 2008, helping to establish the Partners Against Mortality in Epilepsy Meeting in 2012, and funding cutting-edge SUDEP research to this day.

 

Cure has been a leader in SUDEP by:

  • Awarding over $4 million in SUDEP grants to date
  • Collaborating with more than 40 SUDEP investigators
  • Actively engaging with the North American SUDEP Registry and the Sudden Death in the Young Registry, and supporting the development of the Canadian SUDEP Registry
  • Elevating physician and patient awareness about SUDEP
  • Increasing federal funding for SUDEP research
  • Helping establish respiratory arrest as a leading cause of SUDEP
  • Helping establish generalized tonic-clonic seizures as a clear risk factor
  • Supporting the 2017 American Academy of Neurology SUDEP Practice Guidelines for physicians, which can be found here:  https://www.ncbi.nlm.nih.gov/pubmed/28438841

 

If you're a researcher interested in studying SUDEP, please refer to our Grant Process for more information on applying for a grant.

 

Quick Facts

  • SUDEP refers to the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy.  It may be seen with or without evidence of a recent seizure and no cause of death is found on an autopsy (Nashef et al., Epilepsia, 1997)
  • SUDEP is rare in individuals with well-controlled epilepsy, but relatively common in individuals with drug-resistant epilepsy (DiGiorgio et al., Frontiers in Neurology, 2017)
  • The greatest risk factor for SUDEP is a history of frequent generalized tonic-clonic seizures (DiGiorgio et al., Frontiers in Neurology, 2017)
  • Ensuring that epilepsy is well-controlled with a combination of medication, diet and/or other therapeutic mechanism is essential to decreasing the risk of SUDEP

 

 

Questions About SUDEP?

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Program Timeline

Related Research

Evaluation of how extended amygdala control of the autonomic nervous system is altered in...
William Nobis, MD, PhD
Northwestern University
Non-pharmacological manipulations of sleep and circadian rhythms to prevent seizures and s...
Franck Kalume, PhD
Seattle Children's Hospital
Cardiac Mechanisms of SUDEP in Dravet Syndrome
Jack Parent, MD
University of Michigan

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Related News

April 3, 2018
Study: Decreasing the Risk of SUDEP - Structured...

Structured discussion results in behavioural change which reduces individual risk factors.

March 27, 2018
Study: Cardiac Arrhythmia and Neuroexcitability Gene...

Data shows that genomic analysis of brain tissue resected for seizure control can identify potential genetic biomarkers of SUDEP risk.

March 1, 2018
National Association of Medical Examiners position paper:...

Members of the National Association of Medical Examiners, North American SUDEP Registry, Epilepsy Foundation SUDEP Institute, American Epilepsy...