Interagency Collaborative to Accelerate Research on Epilepsy (ICARE) Meeting 2010

March 23, 2010 | 8:00 - August 23, 2010 | 12:00

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.


NIH Neuroscience Center | Conference Room C
6001 Executive Blvd., Rockville, MD

Hosted by NINDS

Related Resources

Agenda and Presentations

March 23, 2010

Time Agenda Item
7:45 a.m.   Registration and Continental Breakfast
8:00 a.m.    Welcome and meeting goals:
Story Landis, PhD (Director, NINDS)
8:05 a.m.    Discussion of DHHS-wide epilepsy group:
Howard Koh, MD, MPH (Assistant Secretary for Health, DHHS)
8:15 a.m.    Introduction to Participants
8:30 a.m.    Epilepsy Benchmarks: Gaps and Opportunities
9:00 a.m.    NINDS/NIH Research Portfolio Presentation
9:15 a.m.   NICHD Research Portfolio Presentation
9:25 a.m.   Tuberous Sclerosis Alliance Research Portfolio Presentation
9:35 a.m.   NIH CounterACT Research Portfolio Presentation
9:45 a.m.   DoD Research Portfolio Presentation
9:55 a.m.   Citizen's United for Research in Epilepsy Research Portfolio
10:05 a.m.  VA Research Portfolio Presentation
10:15 a.m.   ---- Break ----
10:25 a.m.   CDC Research Portfolio Presentation
10:35 a.m.  Epilepsy Foundation Research Portfolio Presentation
10:45 a.m.   HRSA Research Portfolio Presentation
10:55 a.m.   FDA Research Portfolio Presentation
11:05 a.m.  Epilepsy Therapy Development Project Research Portfolio Presentation
11:15 a.m.  American Epilepsy Society Research Portfolio Presentation
11:25 a.m.  Epilepsy initiatives/opportunities for organizational collaboration
Other organizations
11:45 a.m.  Summary, next steps, and new group name
12 Noon  Adjourn


On March 23, 2010, NINDS convened the first meeting of ICARE, an expansion of an interagency epilepsy working group that NINDS has led since 2003.  The meeting served as an opportunity for sharing information about ongoing and planned epilepsy research activities and available resources across member organizations, and as a forum for discussing opportunities and building relationships for future collaborations.

NINDS Director and ICARE chair Dr. Story Landis stated the goals of the meeting and gave an overview of the history of the group. She emphasized that the expansion of the working group reflects the broad scope of research on the epilepsies and the importance of partnerships among supporting organizations, including both Federal agencies and non-governmental and patient advocacy organizations.  Dr. Landis then introduced Dr. Howard Koh, Assistant Secretary for Health, US Department of Health and Human Services (HHS), who announced his interests in HHS-wide coordination to address public health needs faced by people with epilepsy.  Dr. Koh expressed support for ICARE’s continued focus on biomedical research, to be complemented by broader public-health focused efforts across HHS.

Following a presentation of recent progress along the 2007 Epilepsy Research Benchmarks by Benchmarks Stewards chair Dr. Dan Lowenstein, other ICARE members provided brief overviews of their organizations' ongoing and planned activities in epilepsy research.  All meeting presentations, as well as additional slides provided by some members after the meeting, are available to view below.

Presentations and discussions highlighted a number of areas of need in research on the epilepsies. Some of these included:

  • Biomarkers are needed for many types of epilepsy to identify individuals at risk or to monitor disease progression or treatment response. 
  • Comorbidities associated with epilepsy, such as mood disorders and cognitive impairment, remain poorly understood and inadequately treated. 
  • More research is needed to understand risk factors associated with Sudden Unexplained Death in Epilepsy (SUDEP) and how to prevent it. 
  • New and improved animal models are needed to develop treatments for forms of epilepsy that are currently resistant to available therapies.  Models of epileptogenesis are also needed to develop interventions that may prevent epilepsy in those at risk.
  • In an increasingly connected world, global health issues are becoming local issues.  For example, US hospitals admissions are rising for epilepsy caused by the parasitic infection neurocysticercosis, a leading cause of seizures and epilepsy in the developing world.
  • Although collectively common, many forms of epilepsy are individually rare, with implications for research to develop and test interventions.

The first meeting of ICARE opened a wide dialog across governmental and non-governmental organizations that support epilepsy research.  This dialog will continue, both at future annual meetings and more informally among ICARE members on an ongoing basis.

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