2020 Epilepsy Research Benchmarks Plain Language Summary
On January 4-6, 2021 NINDS hosted Curing the Epilepsies 2021: Setting Research Priorities conference virtually via Zoom. This conference was the fourth in a series of Curing the Epilepsies conferences held approximately every seven years since 2000. The goal of the conference is to bring together all stakeholders—including researchers, clinicians, patients, families, and advocates—to evaluate the current state of epilepsy research and consider priorities for future efforts.
As an important outcome, the Curing the Epilepsies conferences have led to the development of Benchmarks for Epilepsy Research, which reflect priorities shared across the epilepsy community for research toward clinically meaningful advances in understanding and treating the epilepsies.
In late 2019, the Epilepsy Benchmark Stewards Committee, coordinated by the American Epilepsy Society, started the process of revising the Epilepsy Research Benchmarks by publishing progress reports for each of the four benchmark areas. These articles were published in Epilepsy Currents in early 2020. The Epilepsy Research Benchmarks were published in 2021. This page is a plain language summary of those benchmarks.
Area 1: Understand what causes the many types of the epilepsies and commonly co-occurring symptoms people experience.
- Learn more about genetics and how changes in some genes result in seizures and epilepsy.
- Learn more about non-genetic causes of the epilepsies, including infection, age, trauma, and risk factors that may make some people more likely to develop epilepsy.
- Look at how changes in brain cells affect how those cells interact with each other and connect one brain area to another, and how these changes cause seizures and epilepsy. Scientists have found many changes in brain cells in the epilepsies, and we need to understand more about how these changes cause seizures.
- Learn more about risk factors for groups of people, for example, related to age, gender, sex, race/ethnicity, and socioeconomic status.
- Look at the link between some epilepsies and autism spectrum disorder, depression, disorders of brain development, and other mental health issues.
Area II: Prevent epilepsy and its progression.
- Understand how genes and the control of those genes can influence how a brain may become prone to seizures during brain development.
- Understand how insults to the brain such as trauma, tumors, or neurodegeneration can influence how someone’s brain can develop epilepsy.
- Identify measurable, biological markers to help identify, predict, and monitor the development of seizures and epilepsy so treatments to prevent epilepsy following insult to the brain can be developed.
- Develop animal models and other model systems that more closely align with human epilepsy to better understand and develop treatments to prevent or cure epilepsy in people.
- Develop new therapies to prevent epilepsy or change its progression that also treat the co-occurring conditions such as depression.
- Apply new tools and techniques for the use of large amounts of data from laboratories and from hundreds or thousands of people with epilepsy to our laboratory research to better understand the complexity of the epilepsies. For example, use artificial intelligence to analyze large amounts of data help to understand why individuals with a similar genetic background can have profoundly different symptoms?
Area III. Improve treatment options for controlling seizures and epilepsy-related conditions while limiting side effects.
- Understand how seizures start, spread, and stop in the brain for different seizure types and different causes of the epilepsies. Learn about what is happening in the brain in between seizures and how that impacts the person and future seizures. We also need to learn more about why people have treatment side effects and how they can be prevented.
- Develop knowledge and tools to create and prescribe the best treatment for each person with epilepsy by using personal characteristics, seizure type and form of epilepsy, risk factors, and other health issues that also occur with epilepsy.
- Develop better ways to study the epilepsies that capture the many essential facets of epilepsy in people. Explore new ways to model the epilepsies in the laboratory that might allow for accelerated development of new treatments.
- Develop and improve non-medication treatment options such as surgical approaches, gene therapy, dietary treatments like the ketogenic diet, and devices that detect and prevent or stop seizures. Reduce or eliminate side effects of these treatments.
- Develop better treatments and ways to monitor and report health status for people with epilepsy and their families so they can manage the condition in their home or other non-medical setting.
Area IV. Limit, treat, or prevent other conditions associated with epilepsy including neurodevelopmental and mental health issues, cognitive problems, health-related quality of life concerns, as well as causes of mortality or death.
- Understand and reduce the effect of epilepsy on non-seizure outcomes such as brain development, mental health, intelligence, reasoning and understanding, and health-related quality of life.
- Understand and limit the effect of epilepsy treatments on non-seizure outcomes, such as brain development, mental health, understanding and awareness, and health-related quality of life.
- Understand non-epileptic seizures not related to epilepsy (also referred to as functional seizures) and improve the treatment options available.
- Understand the causes of and risk factors for sudden unexpected death in epilepsy (SUDEP) and other causes of death in people with epilepsy, and develop preventative strategies and treatments.
- Identify the impact of epilepsy and treatments for the epilepsies on the health of women (fertility, pregnancy, bone health, hormones, mental health, quality of life) and their children (fetal and neonatal development).
- Understand the impact and interaction between sleep and epilepsy and how this impacts non-seizures outcomes. Develop improved treatment options for sleep issues that improve non-seizure outcomes.