Earlier this year, we conducted a community survey where we asked you – the pediatric epilepsy surgery community – what you want us to do:

59% of you responded that you want us to increase funding of research to improve our understanding of how to improve functional outcomes after surgery (e.g. improving hand function after hemispherectomy)

42% want us to increase funding of research to improve our understanding of medical outcomes after surgery (e.g. hydrocephalus after hemispherectomy)

One way we can work together to increase funding around pediatric epilepsy surgery research is the Epilepsy Research Benchmarks – a framework for essential epilepsy research developed by the National Institute of Neurological Disorders and Stroke and the American Epilepsy Society.

Among other things, these benchmarks guide federal and non-profit funding priorities for the next 5 – 7 years. The benchmarks will be presented to the research community at the fourth Curing the Epilepsies conference scheduled for January 4 – 6, 2021.

This short video explains the benchmarks and their importance in epilepsy research:

Understanding the Benchmarks

Organized by “areas”, the benchmarks capture the specific areas of epilepsy research focus for the next several years. (Because the benchmarks are written for researchers and clinicians, you may prefer to read the plain language summary of the benchmarks found here.)

Each section below includes an explainer video prepared by the Epilepsy Leadership Council to help you understand the benchmark areas.

  1. Identify genes and pathways associated with all the epilepsies and epilepsy-related conditions, and determine how changes in genes, alone and in combination with other factors, contribute to the development of these conditions.
  2. Identify and understand the mechanisms by which infections, immune modulation, age, environment, vascular changes, perinatal factors, trauma, and other causes and risk factors, alone and in combination, contribute to the development of the epilepsies and epilepsy-related conditions.
  3. Determine how alterations in molecular and cellular function interact with alterations in circuit and network function in the pathogenesis of cortical hyperexcitability and the clinical epilepsies.
  4. Identify and understand the mechanisms by which factors related to age, gender, race/ethnicity, socioeconomic status, and other features of specific populations affect the risk of developing epilepsy and epilepsy-related conditions.
  5. Determine the relationship between the mechanisms that underlie the epilepsies and those that underlie commonly co-occurring epilepsy-related conditions (e.g., neuropsychiatric or neurodevelopmental disorders).

  1. Understand epileptogenic processes involved in epilepsies with neurodevelopmental origins, including those due to genetic or epigenetic causes.
  2. Understand epileptogenic processes involved in the development of epilepsy following traumatic brain injury, stroke, brain tumor, infections, neurodegeneration, or other insults to the brain.
  3. Identify biomarkers that will aid in identifying, predicting, and monitoring epileptogenesis and disease progression, including markers early after injury/insult that identify those people at risk for epilepsy.
  4. Develop or refine models aligned with the etiologies of human epilepsies to enable improved understanding of epileptogenesis and rigorous preclinical therapy development for epilepsy prevention or disease modification.
  5. Identify new targets and develop interventions to prevent or modify epileptogenesis and the progression of epilepsy and epilepsy-related conditions.
  6. Combine complex systems and/or machine learning approaches with laboratory studies in order to identify convergent phenotypes or pathways, examine background genetic or epigenetic effects, or consider novel molecular reclassifications of disease and the epileptogenic process.

  1. In order to identify new antiseizure or disease-modifying therapeutic targets and mechanism-based therapies, we need to (1) understand the mechanisms of initiation, propagation, and termination of seizures at the cellular and network level for different seizure types, including status epilepticus, and in different forms of epilepsy, (2) understand the neural circuits, cell types, cellular interactions, and genetic factors that participate in interictal activity, different seizure types and in different forms of epilepsy, and (3) understand the cellular, molecular, and network and systems basis for treatment side effects.
  2. Identify genetic, molecular, imaging, immunological, and electrophysiological biomarkers, mechanisms of pharmacoresistance, and clinical informatics tools  so that the most appropriate pharmacological, biological, surgical, or device therapy can be selected for an individual with a common or rare epilepsy.  These efforts should take into consideration time, an individual’s unique set of personal characteristics, including sex and life stage (e.g., childhood, pregnancy, elderly), and consider inclusion of non-seizure outcome measures reflecting other epilepsy-related risks.
  3. Develop, refine, fully characterize, and deploy epilepsy and seizure models (including in non-rodents) that align with the etiologies, clinical features, rhythmicities, treatment responses, and development of resistance of human epilepsies to improve understanding of epileptogenesis, ictogenesis, seizure initiation, seizure termination, disease progression, and therapeutic targets. Explore the utility of new technologies to model human epilepsies and screen for therapies in a high throughput fashion, including iPSCs and organoids.
  4. Identify, develop, and improve pharmacological, surgical, genetic, epigenetic, neuromodulatory, dietary interventions and devices to detect, predict, prevent, or terminate seizures and other epilepsy-related health risks while minimizing adverse effects.
  5. Develop, improve, implement, and validate strategies, protocols, and interventions for epilepsy self-management in the home or other non-medical settings that allow ongoing assessment of treatment response, improve therapy adherence, and minimize adverse effects of therapies.

  1. Understand and limit the impact of epilepsy on non-seizure outcomes such as neurodevelopment, mental health, cognition, health-related quality of life, and other functions.
  2. Understand and limit the impact of anti-seizure treatments (medical, surgical, and other interventions) on non-seizure outcomes, such as neurodevelopment, mental health, cognition, health-related quality of life, and other functions.
  3. Understand mechanisms (psychiatric and neurological) involved in non-epileptic seizures (NES). Develop effective pediatric and adult treatments and assess outcomes in NES including psychopathology and quality of life.
  4. Identify causes, risk factors, and potential preventative strategies for sudden unexpected death in epilepsy (SUDEP) and other epilepsy-related mortality due to co-occurring conditions including depression, anxiety, and suicide in people with epilepsy.
  5. Identify the impact of epilepsy on women’s health outcomes (fertility, pregnancy, bone health, hormones, mental health, QOL) and health of their offspring (fetal and neonatal development).
  6. Understand the role of sleep and circadian rhythms in cognitive and psychiatric and other health related outcomes. Identify and treat sleep as a target to improve non-seizure outcomes, such as neurodevelopment, mental health, cognition, health-related quality of life, and other functions.

Providing Your Input

Now that the new benchmarks have been drafted, it’s time for the patient community to provide input. The National Institute of Neurological Disorders and Stroke welcomes your ideas and comments, and will make changes to the benchmarks based on public comments as appropriate. The crowdsourcing platform IDEASCALE is used to collect public comments through this online campaign.

Watch this short video to understand why it’s important for the research community to hear from you:

How To Participate

  • Go to the NINDS Public Crowdsourcing Community webpage for the 2020 Epilepsy Research Benchmarks here.

  • Register to create an account and profile

  • Share your ideas and comments about the benchmarks, “like” someone else’s comments, or comment on someone else’s comment

  • If you prefer, you can submit your comments via email to NINDSIdeaScaleSupport@mail.nih.gov.

Tips for providing comments

  • Don’t be intimidated! Your child’s epilepsy surgery journey matters. Tell your story as it relates to one of the benchmark areas.
  • Comment in your own voice. You don’t need to use medical terminology. Authentic comments are welcome and needed.
  • Be genuine. What’s missing from the benchmarks? Is there an area that should be rewritten?


Two of the benchmark areas include epilepsy surgery. We encourage you to comment about these benchmarks and engage in discussions with other commenters about the importance of the benchmark to your family and our community.

Area III …. 4. Identify, develop, and improve pharmacological, surgical, genetic, epigenetic, neuromodulatory, dietary interventions and devices to detect, predict, or terminate seizures and other epilepsy-related health risks while minimizing adverse effects.

Area IV ….. 2. Understand and limit the impact of anti-seizure treatments (medical, surgical, and other interventions) on non-seizure outcomes, such as neurodevelopment, mental health, cognition, health-related quality of life, and other functions.

Last year, we held a research meeting where we discussed the massive gaps in functional outcomes research after large pediatric epilepsy surgeries. At the end of the meeting, we decided there were three main research areas that needed to be addressed:

  • Understanding postoperative hydrocephalus;
  • Understanding post-surgical mental health issues; and,
  • Understanding and improving literacy after surgery and other educational interventions.

We encourage to comment about the benchmarks and the research areas above. For example, if your child experienced hydrocephalus after hemispherectomy, you might write about your the diagnostic journey to hydrocephalus, success or failure of treatments, and how hydrocephalus has impacted your child, and encourage more research funding in this area.

If your child has experienced mental health issues after surgery, share your story in support of the benchmarks to encourage more funding in that area.

You can also suggest that the benchmark be rewritten. For example, should the benchmark be clarified to list educational outcomes? Why is that important to you?

Do you need help?

  • The DEE-P Initiative has a detailed, one-hour video about the benchmarks and how to comment here. We encourage you to watch the whole video to take a “deep dive” and understand the benchmarks and the importance of your comments. Specific instructions on how to use the crowdsourcing platform and comment on the benchmarks starts at minute 20:00.
  • Our advocacy partners at the Dravet Syndrome Foundation have prepared helpful instructions on how to join the crowdsourcing platform and provide comments here;
  • Feel free to set up a time for us to walk you through the process and provide you with any assistance you might need to provide comments. You can schedule a time here: https://calendly.com/thebrp/30min.

What’s next?

The National Institutes of Neurological Disorders and Stroke has launched a second campaign to collect input around transformative ideas around epilepsy research. We’ll publish a blog post soon about how you can advocate for big change by providing your transformative ideas.

It has been a tremendous honor for us to work alongside other Epilepsy Leadership Council members on behalf of the entire membership to bring the patient voice to these benchmarks. Now, it’s time for our community’s voice to be heard. If we want to move pediatric epilepsy surgery research forward to answer all the questions we have about our children, this is a powerful way to do it.

The Epilepsy Leadership Council Research Benchmarks Workgroup includes:
Chair Laura Lubbers, PhD, CURE Citizens United for Research in Epilepsy; Chair Ilene Miller, Rare Epilepsies Network
Members: Mary Anne Meskis, Dravet Syndrome Foundation; JayEtta Hecker, Wishes for Elliott; Heidi Grabenstatter, PhD, International Foundation for CDKL5 Research; Brandy Fureman, PhD, Epilepsy Foundation; Steve Roberds, PhD, Tuberous Sclerosis Alliance; Vanessa Vogel-Farley, Dup15q Alliance; Brandy Parker-McFadden, My Epilepsy Story; Amber Freed, SLC6A1Connect; Monika Jones, JD, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation

about the author

Monika Jones, JD, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. You can read her research works at orcid.org/0000-0001-6086-3236.

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