Interagency Collaborative to Accelerate Research on Epilepsy (ICARE) Meeting 2021

Epilepsy research needs reach across the missions of multiple NIH Institutes and Centers and across many organizations outside the NIH.  As the primary NIH Institute for epilepsy research, NINDS leads this working group, with broad representation from the NIH, other Federal agencies, and the research and patient advocacy communities. Annual meetings provide a forum for sharing information about ongoing and planned epilepsy research activities, highlighting advances and discussing needs and opportunities, and promoting increased collaboration toward common research goals.

Zoom | Hosted by NINDS

Related Resources

Agenda and Presentations

Moderator: Adam Hartman, MD; Program Director, Division of Clinical Research, NINDS

Member Reports

Member Update Reports(pdf, 518 KB)

Summary

The ICARE group held its annual meeting virtual on the zoom platform on May 21, 2021. The meeting opened with introductions and  highlights of accomplishments and collaborative opportunities from the ICARE members, also documented in the ICARE member reports(pdf, 518 KB)(pdf, 518 KB) (submitted prior to the meeting). Dr. Koroshetz, director NINDS, provided an update on the Federal budget outlook for the NIH and NINDS as well as some more specific details on epilepsy research highlights from the NINDS(pdf, 1021 KB). Next Eileen Murray, executive director of the American Epilepsy Society (AES), provided an overview of the new strategic plan for AES(pdf, 5430 KB) and some of the new programs implemented to support the goals of this plan. This was followed by an overview of the new goals and priorities for the Epilepsy Leadership Council(pdf, 609 KB) (ELC), the patient advocacy group, by its new chair Amy Brin, executive director and CEO of the Child Neurology Foundation. The morning session was concluded by the presentation of the annual ICARE epilepsy research portfolio(pdf, 764 KB) analysis by Dr. Miriam Leenders, program director NINDS.

After a lunch break, the meeting continued with a summary of the recent 2021 Curing the Epilepsies Conference(pdf, 1482 KB), held on January 4-6, by the Benchmark Stewards Committee chair Dr. Eric Marsh.  Followed by a panel discussion on gaps and opportunities in translating basic epilepsy research progress in improved clinical care for people with epilepsy. Panelists from across the spectrum of epilepsy research from basic science to clinical care, and including patient advocacy and industry perspectives, were invited to provide their expert opinions on this topic (see agenda for complete listing of panelists).  After being introduced by session moderator Dr. Adam Hartman, program director NINDS, each panelist touched upon different opportunities for accelerating translational research to improve epilepsy patient care. The major advances in identifying the genetic causes of epilepsy syndromes is moving the field toward precision medicine. However, to build upon this progress several basic and clinical research questions remain to be addressed for successful translation into precision treatments. Recently developed novel research tools and technology now provide great opportunities for a better mechanistic understanding of all the identified genetic causes, a better understanding of the circuit abnormalities underlying seizures and other behavioral dysfunction, a better alignment of animal models with human epilepsy syndromes, and validated outcome measures beyond seizures.  The latter was also mentioned in the broader context of the need to better capture and document assessments of clinical evaluations and treatment outcomes in epilepsy patient care. Several panelists pointed out the lack of implementation science in epilepsy research, which could provide great opportunities to improve patient care and help to identify and stratify patients into new and nimble study designs to facilitate translation from pre-clinical and clinical research.  Although such an approach would require a culture shift within epilepsy clinical research and care, it was also pointed out that the emergence of electronic learning healthcare systems and the national network of epilepsy clinical care centers provide excellent opportunities for implementation of collaborative networks and data infrastructures to achieve these goals.   Furthermore, creating more opportunities for improved collaborations between basic and clinical scientists was considered essential to move the epilepsy translational research field forward. And one last point that was raised throughout the discussion is that strategies should be developed to recruit and train a more diverse epilepsy research workforce. Investments in attracting data scientists and engineers into epilepsy research field should be made as these areas become integrated in all aspects of research from basic to clinical implementation. And there also is a need for more epilepsy researchers trained in translational research and for more clinical trialists and clinical scientists who are given the opportunities to center their careers around clinical trials and clinical and implementation research. While several gaps and needs persist in the research pipeline, there was great optimism among the panelists that much progress in translation can be made by taking advantage of the recent development of novel tools and technology, training of a more diverse and inclusive epilepsy research workforce, and by implementation of an infrastructure that promotes new partnerships and data sharing.