Drivers of US Healthcare Spending for Persons with Seizures and/or Epilepsies, 2010-2018

Abstract found on Wiley Online Library


Objective: To characterize spending for persons classified with seizure or epilepsy and determine if spending has increased over time.

Methods: In this cross-sectional study we pooled data from the Medical Expenditure Panel Survey (MEPS) household component files for 2010 to 2018. We matched cases to controls on age and sex of a population-based sample of MEPS respondents (community-dwelling persons of all ages) with records associated with a medical event (e.g., outpatient visit; hospital inpatient) for seizure, epilepsy, or both. Outcomes were weighted to be representative of the civilian, non-institutionalized population. We estimated the treated prevalence of epilepsy and seizure, healthcare spending overall and by site of care, and trends in spending growth.

Results: We identified 1,078 epilepsy cases, and 2,344 seizure cases. Treated prevalence was 0.38% (95% CI =0.34-0.41) for epilepsy, 0.76% (95% CI=0.71-0.81) for seizure, and 1.14% (95% CI: 1.08-1.20) for epilepsy or seizure. The difference in annual spending for cases compared to controls was $4,580 (95% CI: $3,362-$5,798) for epilepsy, $7,935 (95% CI: $6,237-$9,634) for seizure, and $6,853 (95% CI: $5,623-$8,084) for epilepsy or seizure, translating into aggregate costs of $5.4 billion, $19.0 billion, and $24.5 billion. From 2010 to 2018, the annual growth rate in total spending incurred for seizures and/or epilepsies was 7.6% compared to 3.6% among controls.

Significance: U.S. economic burden of seizures and/or epilepsies is substantial and warrants interventions focused on their unique and overlapping causes.

Automated Seizure Detection with Non-Invasive Wearable Devices: A Systematic Review and Meta-Analysis

Abstract found in Wiley Online Library


Objective: To review the reported performance of non-invasive wearable devices in detecting epileptic seizures and psychogenic non-epileptic seizures (PNES).

Methods: We conducted a systematic review and meta-analysis of studies reported up to November 15, 2021. We included studies that used video-EEG monitoring as the gold standard to determine the sensitivity and false alarm rate (FAR) of non-invasive wearables for automated seizure detection.

Results: Twenty-eight studies met the criteria for the systematic review, of which 23 were eligible for meta-analysis. These studies (1269 patients in total; median recording time 52.9 hours per patient) investigated devices for tonic-clonic seizures using wrist worn and/or ankle worn devices to measure 3D accelerometry (15 studies), and/or wearable surface devices to measure electromyography (eight studies). The mean sensitivity for detecting tonic-clonic seizures was 0.91 (95% confidence interval, 0.85-0.96; I2 =83.8%); sensitivity was similar between the wrist worn (0.93) and surface devices (0.90). The overall FAR was 2.1/24 hours (95% CI, 1.7–2.6; I2 =99.7%); FAR was higher in wrist worn (2.5/24 hours) than in wearable surface devices (0.96/24 hours). Three of the 23 studies also detected PNES; the mean sensitivity and FAR from these studies were 62.9% and 0.79/24 hours, respectively. Four studies detected both focal and tonic clonic seizures and one study detected focal seizures only; the sensitivities ranged from 31.1% to 93.1% in these studies.

Significance: Reported non-invasive wearable devices had high sensitivity but relatively high false alarm rate in detecting tonic-clonic seizures during limited recording time in a video-EEG setting. Future studies should focus on reducing false alarm rate, detection of other seizure types and PNES, and longer recording in the community.

CURE Epilepsy Update: May 2022

Greetings Epilepsy Community,

Mental health remains an ongoing concern within the epilepsy community, with over 30% of people with epilepsy having a comorbid psychiatric disorder such as depression or psychosis. It’s important that we increase the conversation around the diagnosis, treatment, and challenges that people with mental health issues have in general and within our community. To support this effort, we hosted a webinar on this issue on May 5, and will also be sharing additional insights on our May 11 Seizing Life® episode. You can find additional resources to help with mental health education, awareness, and advocacy on our website.

On a more celebratory note, we are quickly approaching June 1, when we will gather together in honor of the advances research has made at the CURE Epilepsy Annual Benefit in Chicago. And speaking of research, we are excited to announce our newest Catalyst Grantees below. We look forward to seeing their work over the next two years and the impact it will have on the epilepsy community.

In other exciting news, I was honored to have been selected to participate in the Milken Institute’s FastCures LeadersLink Program. The program aims to help promising nonprofit research leaders from around the world build high-performing organizations and facilitate the growth of their peer support network. The connections I will build and the knowledge I will gain through this program will help to further advance CURE Epilepsy’s mission to find a cure.

Through research there is hope.





In this CURE Epilepsy Update, please find information on:

CURE Epilepsy’s 2022 Annual Chicago Benefit

Miss our earlier announcement for the upcoming CURE Epilepsy 2022 Annual Benefit? Visit the Benefit Site for all the details on this amazing evening, including our exciting musical guests, Barenaked Ladies! Your support has helped advance science to find a cure and your ongoing generosity inspires our researchers and clinicians to continue to drive science forward on behalf of the community.

Enter Benefit Site

May is Mental Health Awareness Month

This May, we shine a light on epilepsy and mental health. Mental health is an extremely important topic for those with epilepsy as studies have shown that approximately one-third of people with epilepsy experience some form of psychiatric disorder. To learn more about the relationship of epilepsy with psychiatric disorders, visit our Mental Health Awareness Month webpage, listen to our Seizing Life “Mental Health and Epilepsy: What You Should Know” podcast, watch our webinar “Anxiety and Depression Associated with Epilepsy”, and watch our recent webinar from May 5. Additionally, we will be premiering a new Seizing Life on epilepsy and mental health on Wednesday, May 11, so please tune in.

Learn More

Webinar: Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
According to recent studies, Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age. This webinar will discuss what we know about SUDEP, specifically in the rare epilepsy community, as well as what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. Presenters will share ideas on how to discuss SUDEP with doctors, from both the perspective of a physician and a parent of a child diagnosed with a rare genetic epilepsy who has educated themselves about SUDEP and taken steps to reduce the risk of SUDEP for their child.


CURE Epilepsy Catalyst Award Grantees

We are delighted to announce our most recent CURE Epilepsy Catalyst Award grantees. The Catalyst Award is a two-year, $250,000 grant that supports the nimble development of data necessary to advance ideas towards clinical trials

  • Drs. James PaulyMatthew Gentry, and Greg Gerhardt from the University of Kentucky will be studying “Safety and Biodistribution of a Novel Enzyme-Antibody Fusion in a Canine Model”. This research will test the safety and brain distribution (in canine models) of a novel drug that they hope will help treat a devastating and fatal childhood epilepsy known as Lafora disease.
  • Dr. John Gledhill from Cognizance Biomarkers, LLC is working on “Confirmation of Plasma Biomarkers that Predict Seizure control in People with Newly Diagnosed Focal Epilepsy”. Dr. Gledhill and his team are seeking to develop an algorithm to predict response to initial antiseizure medications using a blood test. If successful, this study would provide doctors the ability to predict whether typical treatments for newly diagnosed epilepsy patients will work and will help them get to effective treatments more quickly.

See Our Grantees

CURE Epilepsy Discovery
For his CURE Epilepsy “Prevention of Acquired Epilepsies” grant, Dr. Xiaoming Jin and his team sought to understand the role of two related signaling pathways called TLR4 and RAGE, in the development of post-traumatic epilepsy (PTE) following brain injury in mice. Research to assess what happens in the brain after a traumatic brain injury (TBI) is crucial to discovering possible therapeutic options to prevent epilepsy from developing. Data from Dr. Jin’s lab gives hope that blocking either of these pathways may one day prevent PTE.

Learn More

CURE Epilepsy’s CEO, Beth Lewin Dean, Selected for FasterCures LeadersLink Program
We are delighted to announce that our CEO, Beth Lewin Dean, has been selected to participate in the Milken Institute’s FasterCures LeadersLink program. This program offers the opportunity to work with peers at other nonprofit research organizations, mentors and experts, and a broad network of professionals across the entire biomedical ecosystem. This includes pharmaceutical developers, policymakers, regulators, payers, patient organizations, nonprofit organizations, providers, and researchers. This is an exciting resource for which CURE Epilepsy is grateful.

Learn More

See the Epilepsy Awareness Campaign
You have likely heard that 1 in 26 people in the US will be impacted by epilepsy, but what does that really look like? CURE Epilepsy has partnered with the Danny Did Foundation, and the Epilepsy Foundation of Chicago to bring these numbers to life. By using highly recognizable venues in the Chicago market, this campaign demonstrates how many people 1 in 26 represents at a White Sox baseball game, a Bears football game, Navy Pier, or a Blackhawks hockey game. You can see this epilepsy awareness campaign across the Greater Chicago Area at CTA train stations and on our website.

Learn More

Join Team CURE Epilepsy at the Chicago Triathlon
Looking to demonstrate your prowess in not just one, but three sports? What about raising money to support epilepsy research? Look no further. Help support CURE Epilepsy by participating in the 2022 LifeTime Chicago Triathlon on Saturday, August 27 – Sunday, August 28.  No matter what distance you choose (international or sprint), we have secured 15 charity spots for individuals who want to swim, bike, and run for research through the most iconic spots in our hometown.

Learn More

New from the Seizing Life® Podcast

A Post-Traumatic Epilepsy Journey: Diagnosis Acceptance Leads to Career Helping Others

Mark DeFee shares his years-long journey with post-traumatic epilepsy from his diagnosis following multiple concussions, through his years of denial in college, to his acceptance and efforts to manage his seizures.

Watch or Listen

A Remarkable Journey to Seizure Freedom Through the Ketogenic Diet

Jim Abrahams, creator of some of the biggest comedy films of all-time and founder of the Charlie Foundation, shares his son’s troubling and remarkable epilepsy journey to seizure freedom through the ketogenic diet.

Watch or Listen

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

New Item in the CURE Epilepsy Store
Our Nike women’s polos are now in stock! Get yours before they sell out, and check out our other items to show your CURE Epilepsy pride and help raise awareness about the need to find a cure for epilepsy.


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

  • June 1 – CURE Epilepsy’s 2022 Annual Event
  • June 23 – International Dravet Syndrome Awareness Day
  • August 1-31 – Seizure Dog Awareness Month
  • October 19 – SUDEP Action Day
  • November 1 – International LGS Awareness Day
  • November 1-30 – Epilepsy Awareness Month
  • 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 Rashetta’s Story

Making Remote Measurement Technology Work in Multiple Sclerosis, Epilepsy and Depression: Survey of Healthcare Professionals

Abstract found in DocWire News

BACKGROUND: Epilepsy, multiple sclerosis (MS) and depression are long term, central nervous system disorders which have a significant impact on everyday life. Evaluating symptoms of these conditions is problematic and typically involves repeated visits to a clinic. Remote measurement technology (RMT), consisting of smartphone apps and wearables, may offer a way to improve upon existing methods of managing these conditions. The present study aimed to establish the practical requirements that would enable clinical integration of data from patients’ RMT, according to healthcare professionals.

METHODS: This paper reports findings from an online survey of 1006 healthcare professionals currently working in the care of people with epilepsy, MS or depression. The survey included questions on types of data considered useful, how often data should be collected, the value of RMT data, preferred methods of accessing the data, benefits and challenges to RMT implementation, impact of RMT data on clinical practice, and requirement for technical support. The survey was presented on the JISC online surveys platform.

RESULTS: Among this sample of 1006 healthcare professionals, respondents were positive about the benefits of RMT, with 73.2% indicating their service would be likely or highly likely to benefit from the implementation of RMT in patient care plans. The data from patients’ RMT devices should be made available to all nursing and medical team members and could be reviewed between consultations where flagged by the system. However, results suggest it is also likely that RMT data would be reviewed in preparation for and during a consultation with a patient. Time to review information is likely to be one of the greatest barriers to successful implementation of RMT in clinical practice.

CONCLUSIONS: While further work would be required to quantify the benefits of Remote measurement technology (RMT) in clinical practice, the findings from this survey suggest that a wide array of clinical team members treating epilepsy, MS and depression would find benefit from RMT data in the care of their patients. Findings presented could inform the implementation of RMT and other digital interventions in the clinical management of a range of neurological and mental health conditions.

Efficacy, Safety, and Economic Impact of Diazepam Suppositories with As-Needed Acetaminophen for Prevention of Seizure Recurrence During the Same Fever Episode in Children with Suspected Simple Febrile Seizures

Abstract found in PubMed

Objective: To evaluate the efficacy, safety, and economic impact of diazepam suppositories with as-needed acetaminophen in comparison with as-needed acetaminophen alone for prevention of seizure recurrence during the same fever episode in suspected pediatric simple febrile seizures (SFS).

Methods: This single-center, prospective, observational study was conducted from July 29, 2019 to February 15, 2021 at a children’s hospital. Children aged 6 months to 60 months presenting to the emergency department with suspected SFS were included. Participants receiving both diazepam suppositories and as-needed acetaminophen were compared with those receiving as-needed acetaminophen alone. The primary outcome was seizure recurrence during the same fever episode. The secondary outcomes included the incidence of central nervous system (CNS) pathologies, adverse events, and medical costs.

Results: Of the 316 participants, 228 (72.2%) had their first febrile seizure. Diazepam (0.3-0.5 mg/kg for up to two doses) was administered to 88/316 patients (27.8%). The outcomes were available for 306 patients. The recurrence rate was 3.5% (3/85) in the patients receiving diazepam with as-needed acetaminophen and 12.2% (27/221) in the patients receiving as-needed acetaminophen alone (relative risk: 0.29 [95% CI: 0.09-0.93]; P=0.03). The adjusted odds ratio of diazepam administration against recurrence was 0.23 (95% CI: 0.07-0.78; P=0.02). None of the patients had a CNS pathology. No severe adverse events occurred although mild ataxia was observed significantly more often in the patients receiving diazepam and as-needed acetaminophen (29.4% vs 18.7%, P=0.04). The median medical cost was US Dollars 199 (IQR: 86-244) for the group receiving both medications and US Dollars 202 (IQR: 114-242) for the group receiving as-needed acetaminophen alone.

Significance: Compared with as-needed acetaminophen alone, diazepam with as-needed acetaminophen may reduce seizure recurrence more during the same fever episode without severe adverse events or additional costs in children with suspected simple febrile seizures.

ILAE Classification and Definition of Epilepsy Syndromes with Onset in Neonates and Infants: Position Statement by the ILAE Task Force on Nosology and Definitions

Abstract found in Wiley Online Library

The International League Against Epilepsy (ILAE) Task Force on Nosology and Definitions proposes a classification and definition of epilepsy syndromes in the neonate and infant with seizure onset up to 2 years of age. The incidence of epilepsy is high in this age group and epilepsy is frequently associated with significant comorbidities and mortality. The licensing of syndrome specific antiseizure medications following randomized controlled trials and the development of precision, gene-related therapies are two of the drivers defining the electroclinical phenotypes of syndromes with onset in infancy. The principal aim of this proposal, consistent with the 2017 ILAE Classification of the Epilepsies, is to support epilepsy diagnosis and emphasize the importance of classifying epilepsy in an individual both by syndrome and etiology. For each syndrome, we report epidemiology, clinical course, seizure types, electroencephalography (EEG), neuroimaging, genetics, and differential diagnosis. Syndromes are separated into self-limited syndromes, where there is likely to be spontaneous remission and developmental and epileptic encephalopathies, diseases where there is developmental impairment related to both the underlying etiology independent of epileptiform activity and the epileptic encephalopathy. The emerging class of etiology-specific epilepsy syndromes, where there is a specific etiology for the epilepsy that is associated with a clearly defined, relatively uniform, and distinct clinical phenotype in most affected individuals as well as consistent EEG, neuroimaging, and/or genetic correlates, is presented. The number of etiology-defined syndromes will continue to increase, and these newly described syndromes will in time be incorporated into this classification. The tables summarize mandatory features, cautionary alerts, and exclusionary features for the common syndromes. Guidance is given on the criteria for syndrome diagnosis in resource-limited regions where laboratory confirmation, including EEG, MRI, and genetic testing, might not be available.

Leveraging Electronic Patient Diaries in SUDEP Risk Evaluation

Abstract found in PubMed

Objective: Our aim was to describe the risk factors known to be related to sudden unexpected death in epilepsy (SUDEP) that can be extracted from patients that utilizes an online seizure diary tool (SeizureTracker™).

Method: We conducted a descriptive analysis of SeizureTracker™ users across factors relevant to SUDEP risk. We also compared our app-using cohort to published SUDEP case-control studies.

Results: We report across seven risk factors from 30,813 users of SeizureTracker™ who had a median length of time using the app of 5.69 years (range from 1 month to 15 years). We found that they are at greater risk for SUDEP than groups from published studies (p < .00001) based on the risk factor of generalized tonic-clonic seizures.

Significance: We demonstrated that the population using the SeizureTracker™ tool can be a valuable population for expanding investigation of SUDEP risk factors and is a first step towards establishing a large sample with a method to ascertain data prospectively that might be critical to developing a SUDEP risk algorithm.

Recurrence Rates and Risk Factors for Seizure Recurrence Following Antiseizure Medication Withdrawal in Adolescent Patients with Genetic Generalized Epilepsy

Abstract found in Wiley Online Library

Objective: This study aimed to identify the recurrence rate of genetic generalized epilepsy (GGE) and risk factors for recurrence after antiseizure medication (ASM) withdrawal in adolescent patients.

Methods: We retrospectively reviewed medical records of patients with GGE who were included in the registry at the Department of Child Neurology, National Hospital Organization Nishiniigata Chuo Hospital from 2000 through 2020. The eligibility criteria were as follows: onset of epileptic seizures at <15?years of age, treatment with an ASM, and attempted treatment withdrawal at 10–19?years of age. The rates of seizure recurrence after drug withdrawal were evaluated. Moreover, several variables were evaluated as predictors of recurrence.

Results: In total, 77 patients with GGE (21, 13, and 43 patients with juvenile myoclonic epilepsy [JME], juvenile absence epilepsy [JAE], and epilepsy with generalized tonic-clonic seizures alone [EGTCSA], respectively) were included in this study. Recurrence was detected in 68% of patients with GGE (86%, 31%, and 70% of patients with JME, JAE, and EGTCSA, respectively). Recurrence rates for patients who developed epilepsy at ?13?years of age, those who started dose reduction at ?16?years of age, those who exhibited a seizure-free period of <36 months before withdrawal, and those who chose to discontinue treatment at their own discretion were significantly higher than those for their counterparts. Multivariate analysis revealed that initiation of dose reduction at ?16?years of age was associated with increased recurrence risk. Meanwhile, a diagnosis of JAE was associated with decreased recurrence risk. All patients with JAE were treated with valproic acid.

Significance: anti-seizure medication withdrawal at ?16?years of age and a diagnosis other than juvenile absence epilepsy may be independent risk factors for seizure recurrence after drug withdrawal in adolescent patients.

Hippocampal Position and Orientation as Prognostic Biomarkers for Post-Traumatic Epileptogenesis – an Experimental Study in Rat Lateral Fluid-Percussion Model

Abstract found on Wiley Online Library

Objective: To identify prognostic biomarkers for post-traumatic epileptogenesis derived from parameters related to the hippocampal position and orientation.

Methods: Data was derived from two pre-clinical magnetic resonance imaging (MRI) follow-up studies: EPITARGET (156 rats) and EpiBioS4Rx (UEF Cohort 43 rats). Epileptogenesis was induced with lateral fluid-percussion induced traumatic brain injury (TBI) in adult male Spraque-Dawley rats. In the EPITARGET cohort, ??2T2?-weighted MRI was performed at 2 d, 7 d and 21 d and in the EpiBioS4Rx cohort at 2 d, 9 d, 30 d, and 5 months post-TBI. Both hippocampi were segmented using convolutional neural networks. The extracted segmentation mask was used for a geometric construction, extracting 39 parameters that described the position and orientation of the left and right hippocampus. In each cohort, we assessed the parameters as prognostic biomarkers for post-traumatic epilepsy (PTE) both individually, using repeated measure ANOVA, as well as in combination using random forest classifiers.

Results: The extracted parameters were highly effective in discriminating between sham-operated and TBI rats in both the EPITARGET and EpiBioS4Rx cohorts at all timepoints (t) (balanced accuracy > 0.9). The most discriminating parameter was the inclination of the hippocampus ipsilateral to the lesion at ?=2t=2 d and the volumes at ??7t?7 d after TBI. Furthermore, in the EpiBioS4Rx cohort, we could effectively discriminate epileptogenic vs. non-epileptogenic animals with a longer MRI follow-up, at ?=150t=150 d (AUC 0.78, balanced accuracy 0.80, p=0.0050), based on the orientation of both hippocampi. We found that the ipsilateral hippocampus rotated outward on the horizontal plane, while the contralateral hippocampus rotated away from the vertical direction.

Significance: We demonstrate that assessment of TBI-induced hippocampal deformation by clinically translatable MRI methodologies detects subjects with prior TBI as well as those at high-risk of PTE, paving the way towards subject stratification for antiepileptogenesis studies.

Clemizole and Trazodone are Effective Antiseizure Treatments in a Zebrafish Model of STXBP1 Disorder Featuring the Work of Former CURE Epilepsy Grantee Dr. Scott Baraban

Featuring the Work of Former CURE Epilepsy Grantee Dr. Scott Baraban

Abstract found on Wiley Online Library

CRISPR-Cas9-generated zebrafish carrying a 12 base-pair deletion in stxbpb1b, a paralog sharing 79% amino acid sequence identity with human, exhibit spontaneous electrographic seizures during larval stages of development. Zebrafish stxbp1b mutants provide an efficient preclinical platform to test antiseizure therapeutics. The present study was designed to test antiseizure medications approved for clinical use and two recently identified repurposed drugs with antiseizure activity. Larval homozygous stxbp1b zebrafish (4?days post-fertilization) were agarose-embedded and monitored for electrographic seizure activity using a local field recording electrode placed in midbrain. Frequency of ictal-like events was evaluated at baseline and following 45 min of continuous drug exposure (1?mM, bath application). Analysis was performed on coded files by an experimenter blinded to drug treatment and genotype. Phenytoin, valproate, ethosuximide, levetiracetam, and diazepam had no effect on ictal-like event frequency in stxbp1b mutant zebrafish. Clemizole and trazodone decreased ictal-like event frequency in stxbp1b mutant zebrafish by 80% and 83%, respectively. These results suggest that repurposed drugs with serotonin receptor binding affinities could be effective antiseizure treatments. Clemizole and trazodone were previously identified in a larval zebrafish model for Dravet syndrome. Based primarily on these preclinical zebrafish studies, compassionate-use and double-blind clinical trials with both drugs have progressed. The present study extends this approach to a preclinical zebrafish model representing STXBP1-related disorders, and suggests that future clinical studies may be warranted.