Transformative Research Priorities for the Epilepsies (2020)

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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. Generate novel models of epileptogenesis and the development of epilepsy-associated comorbidities that will meaningfully measure human epilepsy outcome measures.
  2. Reconsider our understanding of epileptogenesis including the progression of epilepsy from the acute to chronic phase and the different cellular and molecular factors that are involved.
  3. Solve the unsolved genetic epilepsies—push beyond traditional genetic approaches to investigate noncoding DNA and to include the investigation of epigenetic influences on epilepsy.
  4. Develop functioning instruments and biomarkers for assessing epilepsy-related mortality to prevent epilepsy-associated deaths.
  5. Leave no group unstudied-ensure research focuses on specific populations of people affected by epilepsy, including children, people with epilepsy with intellectual disability, autism, psychiatric comorbidities, women (including during pregnancy), underrepresented communities (e.g., People of Color, Indigenous People, etc.), and the elderly.
  6. Identify shared mechanisms and pathways between of epilepsy and its comorbidities leveraging genetic, epigenetic, autoimmune, and infectious processes.
  7. Advance the development/validation of biomarkers (e.g., biochemical, genetic, electrophysiological, imaging) for the progression, therapy resistance (to pharmacological and non-pharmacological therapies), resolution, and comorbidity risk of the epilepsies.
  8. Make precision medicine more than a buzz word: develop novel genetic, molecular, immunological, and pharmacological approaches to the treatment of epilepsy, seizures, and other relevant outcomes.
  9. Focus on translational models with real human relevance to study and treat genetics epilepsies: model epilepsy, intellectual disability, and other features and target all of these life-affecting features when developing therapies.
  10. Uncover the network interaction nature of the epilepsies including comorbidities (i.e., how sleep, psychiatric changes, and seizures interact).
  11. Do you have a new transformation research priority to add?  All ideas are welcome!