Curing the Epilepsies 2021 Conference

January 04, 2021 - January 06, 2021

Contact: Miriam Leenders
Contact Email: leenderm@ninds.nih.gov
Location:

Virtual Conference - Join through NIH Videocast



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The Curing the Epilepsies 2021 Conference

The Curing the Epilepsies 2021: Setting Research Priorities virtual conference will be held from January 4-6, 2021.

The conference will be public, Zoomed, videocast live by NIH and archived later for on demand viewing by NIH.

The revised agenda(pdf, 220 KB) (pdf, 215 kb) will focus on discussion of transformative research priorities for epilepsy research that resulted from the crowdsourcing campaigns conducted in September and October 2020.

The Transformative Research Priorities for the Epilepsies (2020) were identified by the AES Epilepsy Research Benchmark Stewards Committee based on input through an NINDS Request for Information (RFI) from the research community and patient advocates in the Epilepsy Leadership Council as part of their process to update the Epilepsy Research Benchmarks.

Please see the NINDS website for more information on the differences between the Benchmarks and the Transformative Research Priorities.

Recordings of the conference are viewable via NIH VideoCast at the links below:

Curing the Epilepsies: Setting Research Priorities (Day 1)
Curing the Epilepsies: Setting Research Priorities (Day 2)
Curing the Epilepsies: Setting Research Priorities (Day 3)

Meeting Summary

The National Institute of Neurological Disorders and Stroke (NINDS) convened the Curing the Epilepsies: Setting Research Priorities conference virtually via Zoom on January 4-6, 2021. This conference was the fourth in a series of Curing the Epilepsies conferences that has been held approximately every 7 years since 2000; this conference, originally scheduled to convene in person in April 2020, was postponed due to the COVID-19 pandemic. The purpose of the series is to evaluate the current state of epilepsy research and consider priorities for future efforts.

The goal of this conference was to bring together stakeholders—including researchers, clinicians, patients, families, and advocates—to identify gaps and opportunities in epilepsy research. Although much progress has been made in epilepsy research in recent decades, the personal stories shared by advocates at this conference underscore the need to expedite progress so that research advances reach patients faster. As such, participants were asked to focus on transformative research priorities for the field, including (1) accelerating the development of new treatments that can be translated to individuals with epilepsy, (2) increasing data sharing and collaboration, and (3) addressing the challenges faced by the research and patient communities.

Over the course of this 3-day conference, researchers, clinicians, and advocates shared their perspectives on the following topics: (1) expediting targeted treatments for the epilepsies, (2) modeling human epilepsies, (3) establishing biomarkers for human epilepsies, (4) harnessing big data to drive epilepsy research and clinical care, (5) emerging research priorities in the epilepsies, and (6) translating research into clinical care. These sessions included panel discussions and breakout groups to allow participants to suggest and refine a set of transformative research priorities that will drive epilepsy research forward.

The transformative research priorities discussed at this conference have the potential to accelerate progress and make a meaningful difference in the lives of patients and families. A recurring theme was the need to increase collaboration and break down the silos that separate basic researchers, clinicians, and advocacy groups. Concerted efforts to increase large-scale collaboration in real time, collect large multimodal datasets that can be integrated with extant datasets, build an infrastructure for the sharing of data and resources, and embrace new analytic strategies to mine these data will help to improve research and current care. Specific goals for these collaborations should include an understanding of the mechanisms that underlie the epilepsies, the development of an array of biomarkers for epilepsies, the improvement of preclinical models of epilepsies, the expansion of epilepsy research and care to underserved communities, and the creation of innovative tools and measures that will expand the capabilities of basic and clinical research alike.

As with earlier Curing the Epilepsies conferences, the Epilepsy Benchmark Stewards Committee, coordinated by the American Epilepsy Society, will revise the Epilepsy Research Benchmarks based on the priorities identified during the conference, as well as from public crowdsourcing campaigns conducted during September and October 2020. These Benchmarks are intended to anchor research over the next 5-7 years in the issues that are key to understanding the epilepsies and improving meaningful outcomes for people with epilepsy through research.

A full report(pdf, 768 KB) (pdf, 750 kb) summarizing the meeting is available.

New 2021 AES/NINDS Epilepsy Research Benchmarks can be found here: Epilepsy Research Benchmarks page

And the following meeting reports have been published in Epilepsy Currents:

The 2021 Epilepsy Research Benchmarks—Respecting Core Principles, Reflecting Evolving Community Priorities

Epilepsy Community at an Inflection Point: Translating Research Toward Curing the Epilepsies and Improving Patient Outcomes