Transformative Research Priorities for the Epilepsies (2020) - Plain Language Version

Transformative Research Priorities for the Epilepsies (2020) - Plain Language Version

The AES Epilepsy Research Benchmark Stewards Committee summarized and prioritized key areas of research regarding epilepsy. The updated Epilepsy Research Benchmarks have incorporated existing research progress over the last 7 years, taking into consideration input from stakeholders from the research community and the Epilepsy Leadership Council.  A new charge of this group is to identify paradigm-shifting, Transformative Research Priorities to stimulate timely and impactful research on the epilepsies with the following goals:

  • Fundamentally improve our understanding of the epilepsies and the lives of people with epilepsy.
  • Stimulate novel and innovative research to address challenges and open questions in the field.
  • Encourage multi-disciplinary approaches and attract new thinking to research on the epilepsies.
  • Identify specific areas of research that, if successfully undertaken, present opportunities for transformation in the understanding and treatment of epilepsy.

The AES Epilepsy Research Benchmark Stewards Committee synthesized extensive feedback from the community to identify Transformative Research Priorities. The process to-date has included extensive committee discussion, feedback from patient advocates in the Epilepsy Leadership Council, and input through an NINDS Request for Information (RFI).

The epilepsy community is now asked to consider specific areas of research in which dedicated efforts have the potential to accelerate science to benefit individuals with epilepsy. We present our committee-generated ideas as we seek new and transformative scientific questions and approaches to dramatically advance our understanding of the epilepsies and the mechanisms that generate seizures. Please consider generating new ideas or expanding upon the Transformative Research Priorities outlined below.

Transformative Research Priorities that span across all of the Epilepsy Research Benchmark Areas:

  1. Create new models that scientists can use to understand epilepsy in humans, particularly how epilepsy and related non-seizure conditions can develop
  2. Reconsider our understanding of how epilepsy develops and progresses over time.
  3. Solve the unsolved genetic epilepsies, using new techniques to identify the genes responsible.
  4. Develop tools to help protect against epilepsy-associated death
  5. Leave no group unstudied-ensure research addresses the needs of specific populations of people affected by epilepsy, including children, the elderly, women, underrepresented communities (e.g., People of Color, Indigenous People, etc.), or people with intellectual disability, autism, or psychiatric comorbidities.
  6. Identify how some biology pathways that generate seizures may also generate related non-seizure conditions.
  7. Develop tools to help scientists and doctors monitor and measure the progression and resolution of epilepsy in people, the responses to treatment, and the risk of non-seizure symptoms.  
  8. Make precision medicine more than a buzz word: develop revolutionary approaches to treat epilepsy, seizures, and other relevant outcomes. 
  9. Closely evaluate the models used to help develop therapies to ensure their appropriate and accurate relevance to the many essential aspects of the human experience with epilepsy
  10. Epilepsy involves networks of activity across different areas of the brain. Uncover those patterns of activity and how they interact to manifest in the human experience of seizures and non-seizure symptoms such as sleep deficits or psychiatric changes.
  11. Add a new transformative research priority by submitting an Idea Submission form on the NINDS Crowdsourcing platform on the Transformative Research Priorities for the Epilepsies Campaign.