University of Iowa Study Uncovers Key Findings in Sudden Unexpected Death in Epilepsy (SUDEP)

Article published by Corridor Business Journal

Recent findings from a study have brought scientists one step closer to understanding SUDEP, a rare but fatal complication of epilepsy. The exact cause of SUDEP is unknown, but studies point to prolonged apnea that persists following a seizure as a major culprit. Neuroscientists found that activating a particular area of the brain called the amygdala induces prolonged loss of breathing that persists even after a seizure has ended. “This is the first study to identify a site in the brain that can cause persistent apnea after the seizure ends,” said Brian Dlouhy, University of Iowa Associate Professor of Neurosurgery and Pediatrics, and senior author on the new study. “These new findings are a critical step in developing our understanding of what causes SUDEP and identifying those individuals at highest risk and ways to prevent SUDEP,” said Vicky Whittemore, Program Director at the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, which contributed funding for the study.

CURE Epilepsy Discovery: Researchers Funded to Investigate Cardiac Biomarkers in Epilepsy Thanks to CURE Epilepsy

Key Points

  • A biomarker is something that can be objectively measured, such as protein in blood or electrical activity in the brain and is used as an indicator of abnormal biological activity. In epilepsy, a biomarker could be used to predict individuals with epilepsy who are at a high risk of sudden death.
  • Previous studies have shown the usefulness of cardiac measures such as heart rate and heart rate variability (HRV, or the amount of time between heartbeats) as potential biomarkers for seizures. Dr. David Auerbach at the Upstate Medical University is extending this knowledge to understand if cardiac measures can distinguish between epileptic seizures and functional or dissociative seizures (FDS), also known as psychogenic non-epileptic seizures (PNES). While FDS are not categorized as epileptic seizures, understanding FDS could have an impact on treating and curing the epilepsies.
  • Dr. Auerbach was recently awarded The CURE Epilepsy Cameron Boyce SUDEP Research Award to explore the role of cardiac biomarkers for Sudden Unexpected Death in Epilepsy (SUDEP). His cross-disciplinary work applies techniques from the field of cardiology to epilepsy.


Deep Dive

Epileptic seizures (ES) are caused by disturbances in electrical activity in the brain. However, in 20-40% of individuals whose seizures are not controlled by antiseizure medications, seizure activity does not correlate with changes in an electroencephalogram (EEG).[1] These seizures are classified as psychogenic non-epileptic seizures (PNES), also known as functional or dissociative seizures (FDS).[2] Many people with FDS have experienced abuse, trauma, or neglect. FDS can co-occur with depressive disorders, personality disorders, and post-traumatic stress disorders. FDS are often debilitating and are associated with a decreased quality of life, substantial emotional burden, and financial and psychosocial loss.[3,4] There is value to the epilepsy field in understanding and studying FDS for several reasons: first, ES and FDS can co-exist,[5] and second, both ES and FDS can impact the cardiac system, leading to changes in heart rate, arrhythmias, and other abnormalities seen on an electrocardiogram (ECG).[6,7] Disturbances in the autonomic nervous system have been seen in individuals with ES and FDS, and this is especially true in drug-resistant epilepsy and cases of Sudden Unexpected Death in Epilepsy (SUDEP).[8,9]

It is important to be able to differentiate between ES and FDS because the characteristics and treatment options for each differ. Similar to ES, there is a high risk of sudden death in individuals with FDS. Alarmingly, those with FDS have 2.5 times the rate of sudden death compared to the general population.[10] People with suspected FDS may undergo testing in an epilepsy monitoring unit using video EEG, but tests done there can lead to inconclusive results. Not being able to properly diagnose FDS can have many detrimental impacts such as delays in getting proper treatment, and inappropriate or even inadvertently dangerous medical treatment.[11,12] Hence, there is an urgent need to develop ways to diagnose FDS and differentiate ES from FDS.

In a recently published paper funded by the University of Rochester Provost Research Award, Dr. Auerbach’s team applied their knowledge of cardiac biomarkers in the study of the autonomic nervous system and FDS.[1] An important function of the autonomic nervous system is to regulate cardiac activity.[13] One measure of autonomic system function is the heart beat-to-beat variability (also known as heart rate variability, or HRV). HRV is the time between each heartbeat. There is generally some variation in the time between heartbeats; this is considered adaptive because it means that the heart can respond to changes in situations, being ready for either increasing or decreasing the heart rate as needed. The team performed ECG to measure the heart’s electrical activity and track the evolution of HR and HRV, to understand if they could be used to distinguish between ES and FDS.[1] In this study, the authors evaluated the evolution of autonomic function for five hours surrounding seizures; they also developed HR and HRV algorithms to differentiate between ES and FDS.16 The authors found that HR and HRV measures such as the HR after the seizure (“post-ictal HR”), and change in HR before and after seizures (“pre-to-post ictal change”) did indeed distinguish between ES and FDS, and that this effect was specific to convulsive events (i.e., those with a significant physical component), and not non-convulsive, seizures (i.e., those without a significant physical component).[1] By taking inputs and knowledge from the field of cardiology, Dr. Auerbach’s team was able to develop biomarkers for FDS, signaling once again that a holistic, interdisciplinary approach to understanding epilepsy is critical.

CURE Epilepsy has long been leading the charge in funding research on seizure-related biomarkers and is committed to advancing this research as it will have the potential to improve outcomes for people with epilepsy by identifying, for example, who may be at risk for epilepsy after a stroke to who may be at risk for epilepsy following a brain injury to who may not respond to antiseizure medications. By using tools that are new to the field of epilepsy and SUDEP but well-accepted in the field of cardiology, Dr. Auerbach’s team is using funding from The CURE Epilepsy Cameron Boyce SUDEP Research Award to explore potential biomarkers, including cardiac biomarkers that may help predict who is at greater risk for SUDEP. His long-term goal is to develop a risk assessment tool for SUDEP based on various biological markers, including cardiac arrhythmias. Additionally, Dr. Auerbach has recently been awarded a $1M grant by the National Institute of Neurological Disorders and Stroke (NINDS). This grant builds on his previous project looking at a cardiac abnormality known as Long QT Syndrome (LQTS), which showed a link between LQTS and an increased prevalence and risk of seizures.[14] Dr. Auerbach’s scientific work is just one example of CURE Epilepsy’s influence on the field, where supporting a promising scientist early in their career has exponential impact when they go on to gain additional government funding, train new epilepsy researchers, and advance their research which will ultimately impact the millions of people living with epilepsy.

By funding transformational research, CURE Epilepsy continues to be committed to advancing the study of biomarkers within priorities areas including SUDEP and post-traumatic epilepsy (PTE); the organization is poised to make even more progress in the area of biomarkers in 2024.


Literature Cited:

  1. Ryan M, Wagner K, Yerram S, Concannon C, Lin J, Rooney P, et al. Heart rate and autonomic biomarkers distinguish convulsive epileptic vs. functional or dissociative seizures Seizure: European Journal of Epilepsy. 2023 Aug; 111: 178-186.
  2. Ertan D, Aybek S, LaFrance WC, Jr., Kanemoto K, Tarrada A, Maillard L, et al. Functional (psychogenic non-epileptic/dissociative) seizures: why and how? J Neurol Neurosurg Psychiatry. 2022 Feb;93:144-157.
  3. Dworetzky B. The Impact of PNES is About More than Counting Events Epilepsy Curr. 2016 Sep-Oct;16:314-315.
  4. Rawlings GH, Reuber M. What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies Seizure. 2016 Oct;41:100-111.
  5. El-Naggar H, Moloney P, Widdess-Walsh P, Kilbride R, Delanty N, Mullins G. Simultaneous occurrence of nonepileptic and epileptic seizures during a single period of in-patient video-electroencephalographic monitoring Epilepsia Open. 2017 Dec;2:467-471.
  6. Romigi A, Ricciardo Rizzo G, Izzi F, Guerrisi M, Caccamo M, Testa F, et al. Heart Rate Variability Parameters During Psychogenic Non-epileptic Seizures: Comparison Between Patients With Pure PNES and Comorbid Epilepsy Front Neurol. 2020;11:713.
  7. Costagliola G, Orsini A, Coll M, Brugada R, Parisi P, Striano P. The brain-heart interaction in epilepsy: implications for diagnosis, therapy, and SUDEP prevention Ann Clin Transl Neurol. 2021 Jul;8:1557-1568.
  8. Anzellotti F, Dono F, Evangelista G, Di Pietro M, Carrarini C, Russo M, et al. Psychogenic Non-epileptic Seizures and Pseudo-Refractory Epilepsy, a Management Challenge Front Neurol. 2020;11:461.
  9. Müngen B, Berilgen MS, Arikano?lu A. Autonomic nervous system functions in interictal and postictal periods of nonepileptic psychogenic seizures and its comparison with epileptic seizures Seizure. 2010 Jun;19:269-273.
  10. Nightscales R, McCartney L, Auvrez C, Tao G, Barnard S, Malpas CB, et al. Mortality in patients with psychogenic nonepileptic seizures Neurology. 2020 Aug 11;95:e643-e652.
  11. Devinsky O, Gazzola D, LaFrance WC, Jr. Differentiating between nonepileptic and epileptic seizures Nat Rev Neurol. 2011 Apr;7:210-220.
  12. Yeom JS, Bernard H, Koh S. Myths and truths about pediatric psychogenic nonepileptic seizures Clin Exp Pediatr. 2021 Jun;64:251-259.
  13. Huikuri HV, Stein PK. Heart rate variability in risk stratification of cardiac patients Prog Cardiovasc Dis. 2013 Sep-Oct;56:153-159.
  14. Auerbach DS, McNitt S, Gross RA, Zareba W, Dirksen RT, Moss AJ. Genetic biomarkers for the risk of seizures in long QT syndrome Neurology. 2016 Oct 18;87:1660-1668.

CURE Epilepsy Update October 2023

Greetings Epilepsy Community,

I hope that you are all enjoying the cooler temperatures, fall activities, and at least where we are, spectacular fall foliage. The end of the year is a very busy time for the epilepsy community, and this year is no different. In October alone, we have hosted a special New York City event, a Hamilton raffle, two Treatment Talks, and many CURE Epilepsy Champion events. On a personal note, my son is a CURE Epilepsy Champion and ran the Chicago Marathon for us last year. This weekend, he will be running the Marine Corps Marathon in Washington DC to raise funds for post-traumatic epilepsy research, which is important for our wounded veteran community. It will be a special race for him as he is a 1stLt in the Marine Corps. You can support his run here. As a CEO and a proud mother, I am honored to have each and every one of you supporting us as we continue our mission to find a cure for epilepsy.

As we enter the final months of our 25th anniversary year, we are undertaking exciting strategic planning and visioning on the next chapter for the organization. As we think about how to update our messaging and improve our website, we would appreciate your participation in an anonymous five-to-ten-minute brand and website survey. Thank you in advance for helping us serve the epilepsy community in ways that continually evolve to meet new needs!

Finally, as many of you know, Sudden Unexpected Death in Epilepsy (SUDEP) Action Day took place last week. It is an important day within our community to both increase education and raise awareness among those unfamiliar with this devastating and often not talked about outcome. Since CURE Epilepsy pioneered the first SUDEP research almost 20 years ago, we have funded initiatives that study why SUDEP occurs and how it can be prevented. Just as I look forward to a day when we have a world without epilepsy, I look forward to a time when no individual passes away due to SUDEP. Until that day comes, I encourage you to review our SUDEP Action Day resources and share them with your family and friends. Doing so might save a life.

With a commitment to inspire hope and deliver impact.

In this CURE Epilepsy Update, please find information on:

Brand and Website Survey

We want your feedback! Please complete this short survey about our communications and website to help us evolve and improve our resources.

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Over $275,000 Raised for Future Research Thanks to Hamilton Unplugged!

Thank you to everyone who was in The Room Where It Happened on Monday, October 23 for Hamilton Unplugged! With your help, we raised over $275,000 for critical epilepsy research. Guests enjoyed a phenomenal performance by Miguel Cervantes and his Broadway friends, including never-before-seen musical mashups, hilarious behind-the-scenes stories from the Hamilton stage, and more.




Thank You to Our CURE Epilepsy Champions

Thank you to our recent CURE Epilepsy Champions who have helped us raise critical epilepsy research funds and who are getting us closer to completion of the 25th Anniversary Champions Challenge – raising $425K for 25 years! Kris Sadens ran, biked, and swam in honor of his son Silas and the 10-year anniversary of Silas’ diagnosis, by participating in the Chicago Triathlon. Erin Monast, her daughter Reagan, and her family hosted the second annual Reagan’s Run, a 5K and 1-mile fun run in Eastern Pennsylvania. Champions also got out their golf clubs from coast to coast to raise funds and awareness for epilepsy in two separate events. The 5th annual Commish Open, in memory of Aiden Nichols Long, was held on September 27 in Maryland and the 3rd annual Epilepsy Awareness Golf Tournament honoring Colton Grothe and Joey Hart in Willamette Valley Oregon was held on October 9.

If you would like more information about the Champions Challenge or hosting your own unique fundraising event, click here. Every participating Champion host will receive a free raffle entry for one trip for a family of four to Epilepsy Awareness Day 2024 at Disneyland California, including airfare, hotel, epilepsy expo, and park tickets. Also, every Champion host who raises over $1,000 will receive a CURE Epilepsy Treasure Pack, with merchandise to help show your CURE Epilepsy pride.

Become a CURE Epilepsy Champion

CURE Epilepsy Discovery: Leading the Charge on Research and Awareness of Sudden Unexpected Death in Epilepsy

In our latest CURE Epilepsy Discovery, we showcase CURE Epilepsy’s work within the SUDEP space. Over the past 25 years, CURE Epilepsy has funded transformative science and significantly furthered awareness of SUDEP, and we will continue to prioritize this important area of research going forward in hopes of eventually preventing this tragic outcome. Read about some of the research and projects we have funded.

Read this Discovery



Treatment Talks on Seizure Emergencies and Childhood Absence Epilepsy Now Available

Two new Treatment Talks were recently released! In the Treatment Talk Diagnosis, Treatment, and Prognosis of Childhood Absence Epilepsy, viewers learn about absence epilepsy, including how it is diagnosed, current treatments available for childhood absence epilepsy, the prognosis for those diagnosed with childhood absence epilepsy, and some of the current research that is occurring in the field. In our Treatment Talk Seizure Emergencies: Delivery Methods and Treatment Options, viewers learn about seizure emergencies, the different delivery options that are available for current rescue medications, and how the recent medications on the market have become more convenient and effective treatment options for seizure emergencies.


Watch Childhood Absence Epilepsy Treatment Talk

Watch Seizure Emergencies Treatment Talk

What’s New from the Seizing Life® Podcast

Infantile Spasms Diagnosis and Treatment Journey Inspires Children’s Book


Kate Kostolansky shares her daughter Charlotte’s infantile spasms journey and explains how these experiences inspired a children’s book designed to help newly-diagnosed families and those around them better understand infantile spasms.

Watch or Listen



Searching for Answers, Providing Support, and Understanding Grief After the Death of a Child


In observance of SUDEP Action Day on October 18, we spoke with Dr. Richard Goldstein, Associate Professor of Pediatrics at Harvard Medical School, about the program he directs conducting research into both Sudden Unexpected Death in Pediatrics (SUDP) and the grieving process of bereaved parents.

Watch or Listen



Watch these and all of our upcoming Seizing Life episodes here.

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Check out the CURE Epilepsy Store to get apparel or accessories to raise epilepsy awareness in time for Epilepsy Awareness Month!




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Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • November 13 – Jeavons Syndrome Awareness Day
  • December 1-7 – Infantile Spasms Awareness Week


1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Hear Dylan’s Story


CURE Epilepsy Discovery: Leading the Charge on Research and Awareness of Sudden Unexpected Death in Epilepsy (SUDEP)

Key Points

  • Sudden Unexpected Death in Epilepsy (SUDEP) is a tragic outcome defined by premature death in people with epilepsy that is not caused by drowning, injury, or other known causes of mortality.
  • CURE Epilepsy has been a leader in driving awareness and research on SUDEP since 2004, when it started the first private research program to investigate SUDEP and its prevention.
  • CURE Epilepsy has advanced the understanding of risk factors associated with SUDEP which   healthcare providers can use to talk to patients about epilepsy and SUDEP.
  • CURE Epilepsy also commemorates individuals who have passed away due to SUDEP. For example, CURE Epilepsy actively participates in an annual SUDEP Action Day in October, when families and organizations across the epilepsy community come together to raise awareness about SUDEP.  


Deep Dive

Sudden Unexpected Death in Epilepsy (SUDEP) refers to deaths in people with epilepsy not caused by drowning, injury, or other known causes of mortality. There is often evidence of an associated seizure, and the death is usually unwitnessed. Unfortunately, SUDEP is underrecognized and underestimated, as coroners and medical examiners may be unaware of the diagnostic criteria that define SUDEP.[1, 2] CURE Epilepsy has been the leading force driving research and raising awareness about SUDEP and since 2004 has funded over 40 projects totaling nearly $6 million to understand the basic biological mechanisms underlying this tragic outcome.   

Former CURE Epilepsy Board Director, Research Committee member, and SUDEP pioneer Jeanne Donalty has been a prominent voice in raising awareness of SUDEP and has worked tirelessly on grassroots approaches for awareness and prevention. Her work was motivated by the loss of her son Christopher when he was 21 years old, the recognition that healthcare providers rarely talked about SUDEP as a potential outcome of epilepsy, and the minimal research at the time in understanding SUDEP. Together with CURE Epilepsy, Jeanne worked with the National Institute of Neurological Disorders and Stroke (NINDS) to help create a “Center Without Walls” called the Center for SUDEP Research (CSR). The CSR employed a range of strategies to explore the causes of SUDEP and identify risk factors that may help prevent it. Former CURE Epilepsy Board Chair and volunteer Gardiner Lapham, who lost her son Henry to SUDEP, was instrumental in the formation of an organization called Partners Against Morality in Epilepsy (PAME). PAME continues to be a driving force in reducing epilepsy mortality by convening an annual conference of diverse stakeholders to discuss epilepsy mortality causes, share research discoveries, and identify means of prevention. CURE Epilepsy is a founding member of PAME and continues to be deeply involved by sitting on the Governance Committee, partnering on annual webinars, and financially sponsoring the annual meeting. 

In addition to advocacy and education, CURE Epilepsy funds innovative research in this field of study. Specifically, CURE Epilepsy researchers have developed SUDEP registries to get a more accurate understanding of the number of people affected, investigated risk factors for SUDEP, and studied the underlying biological mechanisms of SUDEP.   

Impact of SUDEP registries  

A registry is a database of people who have been diagnosed with a certain condition; it can be used to track the outcomes of participants and inform the care of other individuals with the same condition. Dr Elizabeth Donner at the University of Toronto was a recipient of CURE Epilepsy’s 2009 Sudden Unexpected Death in Epilepsy Award. With this funding, she developed a pediatric SUDEP registry in Canada to obtain data on every child with epilepsy who died suddenly and unexpectedly. While previous studies estimated that SUDEP affects 1 in 4,500 children with epilepsy each year,[3] Dr. Donner’s work estimated a much higher number: 1.11 cases of SUDEP per 1,000 children with epilepsy.[4] Her estimate is also in line with another study that made use of the Swedish National Death Registry.[5] Additionally, Dr. Donner and colleagues used the North American SUDEP Registry (NASR) and found that even those with well-controlled epilepsy may be at risk for sudden death.[6] Previous studies had suggested that SUDEP risk was highest in those with treatment-resistant epilepsy; however, the NASR study showed that sudden death can happen to anyone with epilepsy and that it should be discussed with everyone with epilepsy and their caregivers. Specifically, the study revealed that the risk of sudden death appeared to be higher in individuals who had not taken their most recent dose of antiseizure medication, those who were sleep-deprived, and those with psychiatric disorders.[6]  

Understanding the risk factors for SUDEP  

Dr. Torbjörn Tomson at the Karolinska Institute in Sweden was awarded a CURE Epilepsy grant in 2010, which was supported by the Leisher Family Award. His research involved a large, nationwide study on factors associated with increased risk of SUDEP; his findings confirm previous findings that generalized tonic-clonic seizures (GTCS) are a significant risk factor for SUDEP.[7] He found that individuals with GTCS living and sleeping alone are at significant risk for SUDEP. His work supports the use of seizure-monitoring devices to alert caregivers and the recommendation that people with GTCS should share a room with someone when sleeping whenever possible. Also, any treatments to reduce the occurrence of GTCS or to convert GTCS to non-GTCS could be useful in reducing SUDEP risk.[7] 

Understanding the genetic mechanisms underlying SUDEP    

CURE Epilepsy-funded grantees have investigated a multitude of targets and biological mechanisms in people affected by SUDEP, as well as in experimental animal models. The work of Dr. Annapurna Poduri and colleagues in Robert’s Program[1] at Boston Children’s Hospital explored common, underlying, genetic mechanisms that may be associated with SUDEP and other sudden unexpected pediatric deaths. Her team employed a “trio-based” approach, meaning that the child and their parents were studied to understand genetic changes that may have contribute to sudden unexpected death in these children.[8] Using this approach, many genes that were previously not associated with sudden death were reclassified; for example, genes such as SCN1A and DEPDC5 that are implicated in sudden pediatric death have also been shown to be relevant in SUDEP. Dr. Poduri also examined ten infants who died of sudden infant death syndrome (SIDS) and found that two children had variants of the SCN1A gene, which is also implicated in SUDEP.[9] Genes associated with cardiac issues such as arrhythmia and cardiomyopathy (a condition that makes it harder for the heart to pump blood) were also implicated in SUDEP.[8] In a separate study, CURE Epilepsy Award grantee Dr. Christopher Reid at the Florey Institute of Neuroscience & Mental Health at the University of Melbourne sought to understand the risk between SUDEP and cardiac arrhythmia (abnormal or irregular heartbeat). His team studied a gene called KCNH2, as mutations in this gene are linked to cardiac arrhythmias. His work demonstrated the role of KCNH2 mutations in SUDEP and suggests that genetic screening for KCNH2 could help understand an individual’s risk for SUDEP.[10, 11]

In addition to these and dozens of other scientific studies that CURE Epilepsy has funded and is currently funding on SUDEP, CURE Epilepsy is leading a project to standardize the data collected and reported in preclinical studies to improve transparency and rigor. Epilepsy researchers have an opportunity to comment on the common data elements (CDEs) developed through this project until December 31, 2023, after which CURE Epilepsy will distill and publish these best practices. Over the past 25 years, CURE Epilepsy has funded transformative science and significantly furthered awareness of SUDEP, and the organization will continue to prioritize this important area of research going forward in hopes of eventually preventing this tragic outcome.


Literature Cited:

  1. Sudden Unexpected Death in Epilepsy (SUDEP). Available at: Accessed October 5.
  2. Devinsky O. Sudden, unexpected death in epilepsy N Engl J Med. 2011 Nov 10;365:1801-1811.
  3. Harden C, Tomson T, Gloss D, Buchhalter J, Cross JH, Donner E, et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society Neurology. 2017 Apr 25;88:1674-1680.
  4. Keller AE, Whitney R, Li SA, Pollanen MS, Donner EJ. Incidence of sudden unexpected death in epilepsy in children is similar to adults Neurology. 2018 Jul 10;91:e107-e111.
  5. Sveinsson O, Andersson T, Carlsson S, Tomson T. The incidence of SUDEP: A nationwide population-based cohort study Neurology. 2017 Jul 11;89:170-177. 
  6. Chloe V, Fizza H, Elizabeth D, Brian DM, Jeffrey B, Dale H, et al. SUDEP in the North American SUDEP Registry Neurology. 2019;93:e227.
  7. Sveinsson O, Andersson T, Mattsson P, Carlsson S, Tomson T. Clinical risk factors in SUDEP: A nationwide population-based case-control study Neurology. 2020 Jan 28;94:e419-e429.
  8. Koh HY, Haghighi A, Keywan C, Alexandrescu S, Plews-Ogan E, Haas EA, et al. Genetic Determinants of Sudden Unexpected Death in Pediatrics Genet Med. 2022 Apr;24:839-850.
  9. Brownstein CA, Goldstein RD, Thompson CH, Haynes RL, Giles E, Sheidley B, et al. SCN1A variants associated with sudden infant death syndrome Epilepsia. 2018 Apr;59:e56-e62.
  10. Bleakley LE, Soh MS, Bagnall RD, Sadleir LG, Gooley S, Semsarian C, et al. Are Variants Causing Cardiac Arrhythmia Risk Factors in Sudden Unexpected Death in Epilepsy? Front Neurol. 2020;11:925.
  11. Soh MS, Bagnall RD, Bennett MF, Bleakley LE, Mohamed Syazwan ES, Phillips AM, et al. Loss-of-function variants in K(v) 11.1 cardiac channels as a biomarker for SUDEP Ann Clin Transl Neurol. 2021 Jul;8:1422-1432

Nocturnal Seizure Detection: What are the Needs and Expectations of Adults with Epilepsy Receiving Secondary Care?

Abstract found on PubMed

Introduction: Seizure detection devices (SDDs) may lower the risk of sudden unexpected death in epilepsy (SUDEP) and provide reassurance to people with epilepsy and their relatives. We aimed to explore the perspectives of those receiving secondary care on nocturnal SDDs and epilepsy in general.

Materials and methods: We recruited adults with tonic or tonic-clonic seizures who had at least one nocturnal seizure in the preceding year. We used semi-structured interviews and questionnaires to explore their views on SDDs and their experiences of living with epilepsy. None of the participants had any previous experience with SDDs. We analyzed the data using qualitative content analysis.

Results: Eleven participants were included with a nocturnal seizure frequency ranging from once every few weeks to less than once a year. Some participants experienced little burden of disease, whereas others were extremely impaired. Opinions on the perceived benefit of seizure detection varied widely and did not always match the clinical profile. Some participants with high SUDEP risk displayed no interest at all, whereas others with a low risk for unattended seizures displayed a strong interest. Reasons for wanting to use SDDs included providing reassurance, SUDEP prevention, and improving night rest. Reasons for not wanting to use SDDs included not being able to afford it, having to deal with false alarms, not having anyone to act upon the alarms, having a relative that will notice any seizures, not feeling like the epilepsy is severe enough to warrant SDD usage or not trusting the device.

Conclusions: The interest in nocturnal seizure detection varies among participants with low seizure frequencies and does not always match the added value one would expect based on the clinical profile. Further developments should account for the heterogeneity in user groups.

Creighton Husband-Wife Duo Studying Fatal Complications of Epilepsy

Article published by WOWT
Featuring the work of CURE Epilepsy grantees Dr. Kristina Simeone and Dr. Timothy Simeone


A husband-wife science duo is putting their brains together to study other brains.

Their project at the Creighton University School of Medicine is investigating a fatal complication of epilepsy.

It’s called Sudden Unexpected Death in Epilepsy or SUDEP. Those with severe, uncontrolled seizures have a one in 150 chance of dying from this complication. It’s something that hits home for the couple.

“I do this work because I have a friend who has a daughter who is at high risk for SUDEP, and ten years ago when I met her,” said Dr. Kristina Simeone, lead investigator of the lab. “She really inspired me to try to figure out ways she could help keep her daughter alive.”

Powered by a $1.5 million NIH grant and a team of undergraduates, graduate students, and medical students, the study aims to make strides in an area that’s long been understudied.

“About 15 years ago, we started to really start to fully understand. But before that, not much is known about it. And still, not much is known about it,” she said.

What they’ve hypothesized is SUDEP patients can experience a lack of oxygen because of their severe seizures. Some begin breathing normally, but not all.

To find out what’s actually causing that scientists are studying the complication in mice.

Sudden Unexpected Death in Epilepsy During Cenobamate Clinical Development

Abstract found on PubMed

Objective: We assessed mortality, sudden unexpected death in epilepsy (SUDEP), and standardized mortality ratio (SMR) among adults treated with cenobamate during the cenobamate clinical development program.

Methods: We retrospectively analyzed deaths among all adults with uncontrolled focal (focal to bilateral tonic-clonic [FBTC], focal impaired awareness, focal aware) or primary generalized tonic-clonic (PGTC) seizures who received ?1 dose of adjunctive cenobamate in completed and ongoing phase 2 and 3 clinical studies. In patients with focal seizures from completed studies, median baseline seizure frequencies ranged from 2.8 to 11 seizures per 28 days and median epilepsy duration ranged from 20 to 24 years. Total person-years included all days a patient received cenobamate during completed studies or up to June 1, 2022 for ongoing studies. All deaths were evaluated by two epileptologists. All-cause mortality and SUDEP rates were expressed per 1000 person-years.

Results: A total of 2132 patients (n=2018 focal epilepsy; n=114 idiopathic generalized epilepsy) were exposed to cenobamate for 5693 person-years. Approximately 60% of patients with focal seizures and all patients in the PGTC study had tonic-clonic seizures. A total of 23 deaths occurred (all in patients with focal epilepsy), for an all-cause mortality rate of 4.0 per 1000 person-years. Five cases of definite or probable SUDEP were identified, for a rate of 0.88 per 1000 person-years. Of the 23 overall deaths, 22 patients (96%) had FBTC seizures, and all 5 of the SUDEP patients had a history of FBTC seizures. The duration of exposure to cenobamate for patients with SUDEP ranged from 130-620 days. The SMR among cenobamate-treated patients in completed studies (5515 person-years of follow-up) was 1.32 (95% CI 0.84-2.0), which was not significantly different from the general population.

Significance: These data suggest that effective long-term medical treatment with cenobamate may reduce excess mortality associated with epilepsy.

A Unified Hypothesis of SUDEP: Seizure-Induced Respiratory Depression Induced by Adenosine May Lead to SUDEP But Can be Prevented by Autoresuscitation and Other Restorative Respiratory Response Mechanisms Mediated by the Action of Serotonin on the Periaqueductal Gray

Featuring the work of former CURE grantee Dr. Carl Faingold

Abstract found on PubMed

Sudden unexpected death in epilepsy (SUDEP) is a major cause of death in people with epilepsy (PWE). Postictal apnea leading to cardiac arrest is the most common sequence of terminal events in witnessed cases of SUDEP, and postconvulsive central apnea has been proposed as a potential biomarker of SUDEP susceptibility. Research in SUDEP animal models has led to the serotonin and adenosine hypotheses of SUDEP. These neurotransmitters influence respiration, seizures, and lethality in animal models of SUDEP, and are implicated in human SUDEP cases. Adenosine released during seizures is proposed to be an important seizure termination mechanism. However, adenosine also depresses respiration, and this effect is mediated, in part, by inhibition of neuronal activity in subcortical structures that modulate respiration, including the periaqueductal gray (PAG). Drugs that enhance the action of adenosine increase postictal death in SUDEP models. Serotonin is also released during seizures, but enhances respiration in response to an elevated carbon dioxide level, which often occurs postictally. This effect of serotonin can potentially compensate, in part, for the adenosine-mediated respiratory depression, acting to facilitate autoresuscitation and other restorative respiratory response mechanisms. A number of drugs that enhance the action of serotonin prevent postictal death in several SUDEP models and reduce postictal respiratory depression in PWE. This effect of serotonergic drugs may be mediated, in part, by actions on brainstem sites that modulate respiration, including the PAG. Enhanced activity in the PAG increases respiration in response to hypoxia and other exigent conditions and can be activated by electrical stimulation. Thus, we propose the unifying hypothesis that seizure-induced adenosine release leads to respiratory depression. This can be reversed by serotonergic action on autoresuscitation and other restorative respiratory responses acting, in part, via the PAG. Therefore, we hypothesize that serotonergic or direct activation of this brainstem site may be a useful approach for SUDEP prevention.

SMU Biosciences Professor Receives NIH Grant for Research on Epilepsy

Article published by News Wise

Featuring the work of former CURE Epilepsy grantee Dr. Edward Glasscock

An estimated 50 million people worldwide have epilepsy, making them 16 times more likely to die suddenly compared to the general population. SMU biology researcher Edward Glasscock has received a 5-year, $3 million grant from the National Institutes of Health for a study that he hopes will lead to the identification of biomarkers to help identify people at risk for sudden unexpected death in epilepsy, known as SUDEP.

What causes sudden death in people with epilepsy is largely unknown, making it difficult for clinicians and researchers to predict who is most at risk. However, one popular theory is that seizures initiate faulty electrochemical signals in brain regions that control the heart and breathing, causing miscommunication between the brain, heart, and lungs leading to respiratory failure or heart arrhythmias. If the patterns of this faulty inter-organ crosstalk could be identified in people with epilepsy, then it could serve as an indicator for who is most at risk for sudden death, as well as lead to the development of new treatments to prevent SUDEP.

Glasscock, associate professor of biological sciences at SMU (Southern Methodist University) is working in collaboration with Leonidas Iasemidis, of the Barrow Neurological Institute in Phoenix, to investigate how these faulty electrochemical signals affect the brain-heart-lung pathways. Glasscock and Iasemidis are using a multidisciplinary bioengineering systems approach that would not only identify biomarkers but also provide insight on the biological basis of SUDEP, which can lead to better targeted therapies.

Epilepsy, with new cases often diagnosed in young children, occurs because of abnormal electrical activity in the brain that causes seizures. Because there are many different causes and types of epilepsy, it is described as a spectrum disorder, which makes it difficult to study. However, scientists have made strides in discerning the genetic factors and mechanisms that cause some people to develop epilepsy.

In the body, electrochemical signals are related to chemical ion gradients, like potassium or sodium. Cells allow these ions to pass into and out of the cell membrane through channels. These channels are highly regulated because too few or too many of the ions can cause problems with the brain’s signaling pathways. It is thought that one cause of epilepsy is related to genetic mutations that cause these ion channel regulators to malfunction. This results in abnormal interactions between the brain, heart, and lungs, which in turn may cause sudden death.

Researcher Update: April 2023

In this Researcher Update you’ll find information on:

CURE Epilepsy’s Frontiers in Research Seminar Series

The goal of CURE Epilepsy’s Frontiers in Research Seminar Series program is to expose researchers, clinicians, and students to exciting epilepsy research and provide opportunities for young investigators to interact with leaders in the field. CURE Epilepsy will provide $2,500 to each of the selected institutions to offset the costs associated with hosting a seminar. Apply for CURE Epilepsy’s Frontiers in Research Seminar Series by Wednesday, May 31, 2023.

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Partners Against Mortality in Epilepsy (PAME) Call for Abstracts

The 7th Partners Against Mortality in Epilepsy (PAME) Conference will be held on Thursday, November 30, 2023, in Orlando, FL. This conference brings together healthcare providers, researchers, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy to discuss topics related to mortality in epilepsy. Abstracts will be considered from all investigators doing epidemiological, basic, translational, or clinical research on any aspect of mortality in epilepsy. All accepted abstracts will be presented as posters at the PAME meeting.

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A Free PAME Webinar: Sudden Death in Epilepsy (SUDEP): Common Misconceptions

Misunderstandings about SUDEP impact how providers discuss SUDEP risk, how researchers track and investigate the problem, how we think about prevention, and much more. Dr. Orrin Devinsky, a leader in SUDEP research, will challenge our thinking and help identify misunderstandings so we can more effectively study and prevent SUDEP. This one-hour webinar, to be held on Friday, April 28 at 1PM CT, is geared toward healthcare providers, researchers, people with epilepsy, and other interested parties.


NIH Free, Virtual Conference: Ableism in Medicine and Clinical Research

The National Center for Medical Rehabilitation Research (NCMRR) is holding a free, virtual conference on Ableism in Medicine and Clinical Research on April 27-28. This 2-day, virtual workshop focuses on awareness and research opportunities to mitigate the effect of “ableism”—defined by the American Psychological Association as prejudice and discrimination aimed at people with disabilities—in both clinical care and the biomedical and behavioral research enterprise.

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