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.
Agenda and Presentations
|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
|11:45 a.m.||Summary, next steps, and new group name|
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.
- Epilepsy Research Benchmarks(pdf, 595 KB)
- National Institute for Neurological Disorders and Stroke (NINDS/NIH) Research Portfolio(pdf, 271 KB)
- National Institute for Child Health and Human Development (NICHD) Research Portfolio(pdf, 223 KB)
- National Institute on Aging (NIA/NIH) Research Portfolio(pdf, 171 KB)
- National Institue of Arthritis and Musculoskeletal and Skin Diseases (NIAMS/NIH) Research Portfolio(pdf, 0 KB)
- Office of Rare Diseases Research (ORDR/NIH) Research Portfolio(pdf, 255 KB)
- Tuberous Sclerosis Alliance Research Portfolio(pdf, 211 KB)
- NIH CounterACT program(pdf, 206 KB)
- Citizens United for Research in Epilepsy (CURE) Research Portfolio(pdf, 278 KB)
- Department of Veterans Affairs (VA) Research Portfolio(pdf, 119 KB)
- Center for Disease Control (CDC) Research Portfolio(pdf, 383 KB)
- Epilepsy Foundation Research Portfolio(pdf, 295 KB)
- Health Resources and Services Administration (HRSA) Research Portfolio(pdf, 271 KB)
- Food and Drug Administration (FDA) Research Portfolio(pdf, 209 KB)
- Epilepsy Therapy Development Project Research Portfolio(pdf, 361 KB)
- American Epilepsy Society Research Portfolio(pdf, 211 KB)