News Topics: SUDEP

SUDEP Counseling: Where do we stand?

Abstract found on PubMed

Sudden unexpected death in epilepsy (SUDEP) is the leading cause of epilepsy-related death in children and adults living with epilepsy. Several recent clinical practice guidelines have recommended that all individuals living with epilepsy and their caregivers be informed about SUDEP as a part of routine epilepsy counseling. Further, several studies over the last two decades have explored the state of SUDEP counseling. Patients with epilepsy and their families want to be informed about the risk of SUDEP at or near the time of diagnosis and preferably in person. Despite guideline recommendations, many pediatric and adult neurologists do not routinely inform individuals with epilepsy and their families about SUDEP. Some neurologists discuss SUDEP with only a subset of patients with epilepsy, such as those with risk factors like frequent generalized or focal to bilateral tonic-clonic seizures, nocturnal seizures, non-compliance, or medically refractory epilepsy. Proponents of routine SUDEP counseling argue that patients with epilepsy and their families have a “right to know” and that counseling may positively impact epilepsy self-management (i.e., behavioral modification and risk reduction). Some neurologists still believe that SUDEP counseling may cause unnecessary stress and anxiety for patients and their families (although this is erroneous) and that they also have a “right not to know.” This narrative review explores the current gaps in SUDEP counseling, patients’ and caregivers’ perspectives of SUDEP counseling, and SUDEP prevention.

Life After SUDEP: Experiences of Traumatic Loss and Growth

Abstract found on PubMed

Purpose: To understand the experiences of bereaved relatives of individuals who passed due to sudden unexpected death in epilepsy (SUDEP) and to explore the impacts of death in their lives.

Methods: The principles of fundamental qualitative description informed all design decisions. Stratified purposeful sampling included 21 bereaved relatives (parent, sibling, or spouse/partner), aged at least 18 years, of persons who passed away because of SUDEP. In-depth one-to-one interviews were conducted. Directed content analysis was used to code, categorize, and synthesize the interview data.

Results: There was some criticism of emergency response and medical professionals involved in providing insensitive or poor care immediately after SUDEP occurred. Personal hardships described by participants following SUDEP included loss of personal identity, feeling depressed, experiencing guilt, having panic attacks, requiring therapy, as well as having difficulty with anniversaries, dates, and cleaning up a child’s room. Bereaved spouses and parents in particular spoke of experiencing challenges in maintaining other relationships following the death. Some participants spoke of experiencing increased financial hardships. Ways of coping included keeping oneself busy, honoring the memory of the loved one, relying on friends and families, and engaging in advocacy/community work, including raising awareness on epilepsy and SUDEP.

Conclusions: Sudden unexpected death in epilepsy affected several aspects of the day-to-day lives of bereaved relatives. Though methods of coping were similar to the usual strategies adopted by all bereaved relatives, advocacy work related to raising awareness about epilepsy and SUDEP was unique to this group. Guidelines on SUDEP should ideally include recommendations for trauma-informed support and assessment for depression and anxiety to the bereaved relatives as well.

Research Identifies Potential Treatment Target for of Infantile and Epileptic Spasms Syndrome

Article published by News Medical Life Science

New research from Tufts University School of Medicine and the Graduate School of Biomedical Sciences suggests that the timing of the death of certain inhibitory neurons in the brain shortly after birth may be at least partly to blame for infantile and epileptic spasms syndrome (IESS), a rare but devastating form of epilepsy that develops most frequently between four and eight months of age but can emerge within weeks of birth until ages 4 or 5.

Their research in mice suggests both a potential new target for treatment and raises the hope that, in the future, early diagnosis and treatment could detect and prevent some of the most significant impairments associated with the syndrome. The research was published Jan. 30 in the Journal of Neuroscience.

In their research, the Tufts scientists focused their studies on the b-catenin signaling pathway in a mouse model, originally developed by neuroscientist and School of Medicine professor Michele Jacob, that develops a condition analogous to IESS. The mice also demonstrate intellectual disabilities and behavioral abnormalities corresponding to human autism spectrum disorder.

The researchers determined that cortical parvalbumin-positive interneuron development and function are altered in the mice. These neurons are the largest class of GABAergic, inhibitory neurons in the central nervous system.

Assessment of an Under-Mattress Sensor as a Seizure Detection Tool in an Adult Epilepsy Monitoring Unit

Abstract found on PubMed

Objective: Because of SUDEP (Sudden and unexpected death in epilepsy) and other direct consequences of generalized tonic-clonic seizures, the use of efficient seizure detection tool may be helpful for patients, relatives, and caregivers. We aimed to evaluate an under-mattress detection tool (EMFIT®) in real-life hospital conditions, in particular its sensitivity and false alarm rate (FAR), as well as its impact on patient care.

Methods: We carried out a retrospective study on a cohort of patients with epilepsy admitted between September 2017 and June 2021 to Amiens University Hospital for a video-EEG of at least 24 h, during which at least one epileptic seizure was recorded. All video-EEGs records were analyzed visually in order to assess the sensitivity of the under-mattress tool (triggering of the alarm) and to classify the seizure type (convulsive/non convulsive). We also considered whether nurses intervened during the seizure, and the time of their intervention if applicable. An additional prospective survey was conducted over 272 days to analyze the FAR of the tool.

Results: A total of 220 seizures were included in the study, from 55 patients, including 23 convulsive seizures from 15 patients and 197 non-convulsive seizures. Sensitivity for convulsive seizure detection was 69.6%. As expected, none of the non-convulsive seizures was detected. The false alarm rate was 0.007/day. Median trigger time was 74 s, decreasing to 5 s for generalized tonic-clonic seizure. The frequency of nurses’ intervention during convulsive seizures was significantly greater in case of the alarm triggering (100% vs 57%, p<0.02).

Significance: These results suggest that EMFIT® sensor is able to detect convulsive seizures with good sensitivity and low false alarm rate, and allows caregivers to intervene more often in the event of a nocturnal seizure. This would be an interesting complementary tool to better secure the patients with epilepsy during hospitalization or at home.

Communication About Sudden Unexpected Death in Epilepsy: Understanding the Caregiver Perspective

Abstract found on Wiley Online Library

Objective: We aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure.

Methods: We distributed a 24-question survey to caregivers of children with epilepsy. Free text questions were analyzed using a rapid qualitative analysis approach.

Results: Two hundred and twelve caregivers of people with epilepsy completed the survey, including 12 bereaved caregivers. Caregivers’ children had a high seizure burden, with a median seizure frequency of 24 seizures per year (range: 1 to ?100). Most participants were aware of SUDEP at the time of the survey (193/212; 91%) though only a minority had learned about SUDEP from a healthcare provider (91/193; 47.2%). Caregivers typically learned about SUDEP from a nonprofit or online source (91/161; 56.5%). Almost all caregivers wanted to discuss SUDEP with their child’s healthcare provider (209/212; 98.6%), and preferred disclosure from epileptologists (193/212; 91%), neurologists (191/212; 90.1), and/or primary care providers (98/212; 46.2%). In open-ended responses, caregivers highlighted the value of learning about SUDEP from a healthcare provider, the importance of pairing SUDEP risk disclosure with a discussion of how to mitigate risk, and the need for educational resources and peer support.

Interpretation: Caregivers of people with epilepsy appreciate when healthcare providers disclose information about SUDEP, yet typically hear about SUDEP elsewhere. These findings underscore the importance of interventions to improve and support SUDEP risk disclosure. Future work should evaluate strategies to disclose SUDEP risk and the impact of early SUDEP risk disclosure.

Risk of Sudden Unexpected Death in Epilepsy (SUDEP) with Lamotrigine (Lamictal ®) and Other Sodium Channel Modulating Antiseizure Medications

Abstract found on Wiley Online Library

Objective: In vitro data prompted U.S Food and Drug Administration warnings that lamotrigine, a common sodium channel modulating anti-seizure medication (NaM-ASM), could increase risk of sudden death in patients with structural or ischaemic cardiac disease, however its implications for Sudden Unexpected Death in Epilepsy (SUDEP) are unclear.

Methods: This retrospective, nested case-control study identified 101 sudden unexpected death in epilepsy (SUDEP) cases and 199 living epilepsy controls from Epilepsy Monitoring Units (EMUs) in Australia and the USA. Differences in proportions of lamotrigine and NaM-ASM use were compared between cases and controls at time of admission, and survival analyses from time of admission up to 16?years were conducted. Multivariable logistic regression and survival analyses compared each ASM subgroup adjusting for SUDEP risk factors.

Results: Proportions of cases and controls prescribed lamotrigine (p=0.166), one NaM-ASM (p=0.80) or ?2NaM-ASMs (p=0.447) at EMU admission were not significantly different. Patients taking lamotrigine (adjusted hazard ratio [aHR]=0.56; p=0.054), one NaM-ASM (aHR=0.8; p=0.588) or ?2 NaM-ASMs (aHR=0.49; p=0.139) at EMU admission were not at increased SUDEP risk up to 16?years following admission. Active tonic-clonic seizures at EMU admission associated with >2-fold SUDEP risk, irrespective of lamotrigine (aHR=2.24; p=0.031) or NaM-ASM use (aHR=2.25; p=0.029). Sensitivity analyses accounting for incomplete ASM data at follow-up suggest undetected changes to ASM use are unlikely to alter our results.

Significance: This study provides additional evidence that lamotrigine and other sodium channel-modulating anti-seizure medications are unlikely to be associated with an increased long-term risk of SUDEP, up to 16?years post epilepsy monitoring unit admission.

Adherence Patterns in Antiseizure Medications (ASM) Influencing Risk of Sudden Unexplained Death in Epilepsy (SUDEP): a Data Linkage Study Using Dispensed Prescriptions

Abstract found on Pubmed

Objective: Medication adherence is considered an important risk factor for Sudden Unexpected Death in Epilepsy (SUDEP) although measurement accuracy is difficult. Using prescription dispensations, this study aims to estimate antiseizure medication (ASM) adherence and identify adherence patterns that influence epilepsy mortality.

Methods: Retrospective cohort study of tertiary epilepsy outpatients seen at St Vincent’s Hospital (Melbourne), Victoria, Australia, from 1/01/2012 until 31/12/2017. Privacy preserving data-linkage with the Australian national prescription, death and coroner’s databases was performed. We fitted a 4-cluster longitudinal group-based trajectory model for ASM adherence from recurring 90-day windows of prescription dispensations during a 3-year ‘landmark period’ 1/1/2012 to 31/12/2014, using the AdhereR package. We estimated the risk of SUDEP and all cause death for each adherence pattern during an ‘observation period,’ 1/1/2015 to 31/12/2017. The Cox-proportional hazards and logistic regression models were adjusted for age, sex, socioeconomic status, epilepsy duration, comorbidity, drug resistance and inadequate seizure control.

Results: 1,187 participants were observed for a median of 3.2 years (IQR 2.4-4.0 years). We observed 66 deaths with 10 SUDEP cases during the observation period. We identified 4 patterns of ASM adherence: good 51%, declining 24%, poor 16%, and very poor 9%. Declining adherence was associated with an increased risk for SUDEP, hazard ratio 8.43 (95%CI 1.10, 64.45) at 1 year, and HR 9.17 (95%CI 1.16,72.21) at 3 years. Compared to no ASM therapeutic change, the addition of a 2nd to 4th ASM offered increased protection against SUDEP in patients with continuing drug resistant epilepsy.

Significance: ASM non-adherence was observed in half of outpatients with epilepsy. A declining pattern of adherence, observed in a quarter of patients, is associated with more than eight times increased risk of SUDEP. Any ongoing medication interventions must include strategies to maintain and improve ASM adherence if we are to reduce the risk of SUDEP.

Researcher Update: January 2023

In this Researcher Update you’ll find information on:

Last Call to Submit Letters of Intent for CURE Epilepsy’s 2023 Taking Flight and CURE Epilepsy Awards

Last reminder to submit your Letter of Intent for our Taking Flight and CURE Epilepsy awards. All Letters of Intent are due by tomorrow, Tuesday, January 10, 2023, at 9 pm ET.

The Taking Flight Award seeks to promote the careers of early career-stage epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

The CURE Epilepsy Award reflects CURE Epilepsy’s continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals.

Key priority areas for both awards include: 1) basic mechanisms of epilepsy, 2) acquired epilepsies, 3) pediatric epilepsies, 4) SUDEP, 5) treatment-resistant epilepsies, and 6) sleep and epilepsy.

We look forward to receiving your submissions!

See Award Guidelines

NeuroFrontiers Podcast on Childhood-Onset Epilepsy Featuring Research Funded by CURE Epilepsy

Research on the impacts of brain aging in childhood-onset epilepsy supported by funding from CURE Epilepsy is featured in a recent NeuroFrontiers podcast. Listen as Drs. Bruce Hermann, Professor Emeritus at the University of Wisconsin, Madison, WI, and Shlomo Shinnar, Professor Emeritus at Albert Einstein College of Medicine, New York, NY, share insights from a longitudinal study on epilepsy that began in Finland over 50 years ago.

Listen

SUDEP Research Funding Opportunity for Early Career Scientists

PAME (Partners Against Mortality in Epilepsy) is partnering with the American Epilepsy Society (AES) to fund ideas that advance SUDEP Summit priorities through the AES Early Career Grants program. Trainees, fellows, and newly independent investigators are encouraged to apply to any of the eight funding opportunities available. Specifically, PAME is interested in funding projects to advance priorities that will impact SUDEP prevention in the next 5 years. Applications are due Thursday, January 12, 2023.

See Funding Opportunities

NINDS-Sponsored Workshop on Status Epilepticus After Benzodiazepines: Seizures and Improving Long-Term Outcomes

Register now for this NINDS-sponsored workshop taking place from February 28-March 1. The recent approval of intramuscular midazolam (Seizalam®) for acute treatment of status epilepticus (SE) is an important advancement for the treatment of this epilepsy. However, effective treatments that improve neuropathic outcomes after SE becomes refractory to benzodiazepines are a common unmet medical need. This virtual workshop will convene preclinical and clinical researchers, as well as other relevant stakeholders to discuss and define potential therapeutics needed to improve outcomes following SE.

Register

National Workshop on Experimental Models of Post-Traumatic Epilepsy

Register now for this free workshop taking place both in-person at Texas A&M University and via Zoom on Friday, March 10. The Texas A&M Health Institute of Pharmacology and Neurotherapeutics (IPN) is hosting an AES-sponsored National Workshop on Experimental Models of Post-Traumatic Epilepsy (PTE). The IPN team invites you and your colleagues to learn the various facets of PTE research to discover and advance therapeutic agents for this form of epilepsy. The workshop will provide insights into animal models of PTE, laboratory protocols, biomarkers, and therapeutic interventions for traumatic brain injury-induced seizures and post-traumatic epileptogenesis.

Register

Open Position for a Director of The Spinal Cord and Brain Injury Research Center at University of Kentucky College of Medicine

The University of Kentucky (UK) College of Medicine invites applications and nominations for the position of Director to lead the highly ranked Spinal Cord and Brain Injury Research Center (SCoBIRC).

The UK College of Medicine seeks a visionary director with a successful record of research achievement in neurotrauma specifically in spinal cord injury, traumatic brain injury, or appropriately related fields. Exceptional accomplishments as a researcher and academic are a must as the director’s duties will include continuing their own research program as well as supervising and maintaining academic activities.

Learn More and Apply

Survey for Routine Clinical Care Patient-Centered Outcomes for Adults and Children with Epilepsy

ICHOM (The International Consortium for Health Outcomes Measurement), an international nonprofit organization that aims to improve global healthcare, is developing a minimum set of outcomes to be captured in routine clinical care for adults and children with epilepsy.

The Working Group (WG), consisting of healthcare professionals, researchers, and those with lived experience have identified outcomes to be included in the recommendation and is seeking feedback from epilepsy professionals and experts on the relevance of these elements.

The survey should take 15-20 minutes to complete, and the results will be used to guide the WG’s final recommendations. Please share your expertise and provide feedback to help standardize outcome measurements for epilepsy care globally.

Take Survey

CURE Epilepsy Grantee Announcement Fall 2022

CURE Epilepsy is honored to announce our newest CURE Epilepsy grantees. Our research grants are awarded for cutting-edge, novel research projects that seek to accelerate treatments, improve outcomes, and get us to cures so that we can live in a world free of seizures. This year’s grantees’ research will focus on a wide range of epilepsies – sudden unexpected death in epilepsy (SUDEP), sleep and epilepsy, genetic causes of epilepsy, Lafora disease, post-traumatic epilepsy, pediatric epilepsy, and focal epilepsy.

TAKING FLIGHT AWARD GRANTEES – $100,000 for one year 

This award seeks to promote the careers of early-career epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

Jeffrey Calhoun, PhD
Northwestern University – Chicago, Illinois

With this grant, funded by the Joseph Gomoll Foundation, Dr. Calhoun’s research will work to develop a new method to assess the functionality of variants of the SCN1A gene.
Learn More

William Tobin, PhD
The University of Vermont and State Agriculture  – Burlington, Vermont

With a grant co-funded by the KCNT1 Epilepsy Foundation, Dr. Tobin will test strategies to optimize cutting-edge gene therapy methods for the gene KCNT1.
Learn More

Gerben van Hameren, PhD
Dalhousie University– Nova Scotia, Canada

Dr. van Hameren will study a possible way to prevent the development of post-traumatic epilepsy.
Learn More

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CURE EPILEPSY AWARD GRANTEES – $250,000 over two years  

This award reflects CURE Epilepsy’s continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals.

Gordon Buchanan, MD, PhD
University of Iowa Medicine – Iowa City, Iowa

For this grant, generously funded by The Joanna Sophia Foundation, Dr. Buchanan’s group will examine whether a signaling molecule called serotonin drives a time-of-day vulnerability to SUDEP (Sudden Unexpected Death in Epilepsy).
Learn More

Annaelle Devergnas, PhD
Emory University – Atlanta, Georgia

The hypothesis for Dr. Devergnas’ project is that frontal seizures disrupt the normal function of the brain structure called the pedunculopontine nucleus (PPN), leading to changes in sleep, and that manipulating PPN activity might restore normal sleep activity.
Learn More

Juliet Knowles, MD, PhD
Stanford School of Medicine – Palo Alto, California

For this project, Dr. Knowles and her team will study the therapeutic potential for targeting myelin plasticity in Lennox-Gastaut syndrome.
Learn More

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CATALYST AWARD GRANTEES – $250,000 over two years 

The CURE Epilepsy Catalyst Award stimulates and accelerates the development of new, transformative therapies for epilepsy, moving promising preclinical and/or clinical research closer to clinical application.

James Pauly, PhD, Greg Gerhardt, PhD, and Matthew Gentry, PhD
University of Kentucky – Lexington, Kentucky

In collaboration with Enable Therapeutics, Drs. Pauly, Gerhardt, and Gentry developed a potential drug called VAL-1221 that can penetrate brain cells and degrade the aberrant sugar aggregates therein that cause LaFora disease. Having obtained promising initial results, this project will test the safety and brain distribution of this novel therapy.
Learn More

John Gledhill, PhD
Cognizance Biomarkers, LLC  – Philadelphia, Pennsylvania

Dr. Gledhill and the team at Cognizance will build upon their preliminary research showing that people with treatment-resistant epilepsy have differences in inflammation-associated proteins in the blood compared with those who do respond to treatment. For this project, the team proposes to extend their observations by assessing additional blood samples from treatment-resistant and treatment-responsive people with epilepsy and developing an algorithm to predict response to initial anti-seizure medications.
Learn More

Researcher Update: November 30, 2022

In this Researcher Update you’ll find information on:

Final Reminder to RSVP for CURE Epilepsy’s Reception on December 4th at the AES Meeting in Nashville

RSVP now to join CURE Epilepsy leadership and fellow dedicated researchers in honoring our newest grantees during our reception on December 4th at the 2022 American Epilepsy Society Annual Meeting. Light refreshments will be served.
The reception will be held:

  • Sunday, December 4, 2022 @ 6:00 pm – 7:30 pm CT
  • Location: Omni Nashville Hotel, 250 Rep. John Lewis Way South, Nashville
  • Room: Legends A/B (Level 2)

We look forward to seeing you all!

Please note, this is not an official event of the 2022 AES Annual Meeting, nor is it sponsored or endorsed by AES

RSVP Here

Letter of Intent Submissions Open Today for CURE Epilepsy’s 2023 Taking Flight and CURE Epilepsy Awards

Submit your Letter of Intent for our Taking Flight and CURE Epilepsy awards starting today. All Letters of Intent are due by Tuesday, January 10, 2023, at 9 pm ET.

The Taking Flight Award seeks to promote the careers of young epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

The CURE Epilepsy Award reflects CURE Epilepsy’s continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals.

Key priority areas for both awards include: 1) basic mechanisms of epilepsy, 2) acquired epilepsies, 3) pediatric epilepsies, 4) SUDEP, 5) treatment-resistant epilepsies, and 6) sleep and epilepsy.

We look forward to seeing your submissions!

See Award Guidelines

The Pershing Square Foundation Launches the MIND (“Maximizing Innovation in Neuroscience Discovery”) Prize

With the launch of the MIND Prize, The Pershing Square Foundation strives to change the paradigm of neuroscience research by creating a community of next-frontier thinkers who can uncover a deeper understanding of the brain and cognition. Breakthroughs in basic scientific and translational research will yield critical tools for and knowledge of neurodegenerative diseases, including Alzheimer’s disease and dementia. The MIND Prize will bring together the most talented early-to-mid-career investigators across scientific fields with creative and experimental ideas to solve problems that will transform the current understanding of the brain and its impact on human health. The deadline to submit Letters of Intent is Monday, December 12, 2022.

Learn More

SUDEP Research Funding Opportunity for Early Career Scientists

PAME (Partners Against Mortality in Epilepsy) is partnering with the American Epilepsy Society (AES) to fund ideas that advance SUDEP Summit priorities through the AES Early Career Grants program. Trainees, fellows, and newly independent investigators are encouraged to apply to any of the eight funding opportunities available. Specifically, PAME is interested in funding projects to advance priorities that will impact SUDEP prevention in the next 5 years. Applications are due Thursday, January 12, 2023.

See Funding Opportunities

Apply Now for a Postdoctoral Diversity Enrichment Program (PDEP)

The Sergievsky Award for Epilepsy Health Equity and Diversity provides support for early career physicians and scientists who identify as members of underrepresented racial and ethnic groups, and/or who are researching issues that affect medically underserved individuals with epilepsy or seizures or related aspects of health equity. Proposals are due Thursday, January 12, 2023.

Learn More

Funding Opportunity with Burroughs Wellcome Fund (BWF) Innovation in Regulatory Science Awards (IRSA)

BWF’s Innovation in Regulatory Science Awards provides up to $500,000 over five years to academic investigators developing new methodologies or innovative approaches in regulatory science that will ultimately inform the regulatory decisions made by agencies such as the Food and Drug Administration. The deadline to apply is Friday, February 10, 2023.

Learn More

Register for the NIH and NINDS Workshop “Status Epilepticus after Benzodiazepines: Seizures and Improving Long-Term Outcomes”

This virtual workshop, taking place February 28 – March 1, 2023, will convene preclinical and clinical researchers as well as stakeholders to discuss and define indications of potential therapeutics needed to improve outcomes following status epilepticus. Outcomes of the workshop will include a clearer understanding of the unmet therapeutic needs and identification of key gaps in the research, increasing the potential for new therapeutics development.

Learn More