Interagency Collaborative to Accelerate Research on Epilepsy (ICARE) Meeting 2011

June 27, 2011 | 8:00 - 5:00 PM

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 Campus | Conference Room 6
Building 31, 6th Floor C Wing

Hosted by NINDS

Related Resources

Agenda and Presentations

June 27, 2011

Time Agenda Item
Morning session: Information sharing and opportunities for collaboration
8:00 AM Registration and light refreshments
8:10 AM

Welcome and meeting goals:
Story Landis, PhD, Director, NINDS

8:20 AM

Introductions of Participants

8:40 AM

Epilepsy Benchmarks: summary of 2010 advances

9:20 AM NINDS/NIH Research Portfolio Presentation
9:40 AM Department of Health and Human Services (HHS)
Update on Epilepsy-related Activities
9:50 AM DoD Research Portfolio Presentation
10:00 AM American Epilepsy Society Research Portfolio Presentation
10:10 AM Citizen's United for Research in Epilepsy Research Portfolio Presentation
10:20 AM BREAK
10:35 AM Tuberous Sclerosis Alliance Research Portfolio Presentation
10:45 AM CDC Research Portfolio Presentation
10:55 AM Epilepsy Foundation Research Portfolio Presentation
11:05 AM Vision 20/20
11:15 AM Epilepsy Therapy Project Research Portfolio
11:25 AM FDA Research Portfolio
11:35 PM Discussion: research needs and opportunities for organizational collaboration
12:15 PM LUNCH
Afternoon Session: Focus on Sudden Unexpected Death in Epilepsy (SUDEP)
1:15 PM Current state of SUDEP research (Sam Wiebe)
2:00 PM

Review goals established during the 2008 NINDS workshop and by the AES/EF SUDEP taskforce (Elson So)


Ongoing and planned initiatives
Federal Agencies:

  • NINDS (Brandy Fureman) 15 minutes
  • CDC (David Thurman) 25 minutes
3:15 PM

Ongoing and planned initiatives, continued

  • AES/EF task force activities (Elson So) 15 minutes
  • CURE (Gardiner Lapham) 10 minutes
  • ETP (Joyce Cramer) 10 minutes
3:50 PM Discussion: assess progress and identify remaining needs and opportunities
4:35 PM Wrap-up and Conclusions from the full day
Discussion: future ICARE activities and member interactions
5:00 PM Adjourn


The second annual Interagency Collaborative to Advance Research in Epilepsy (ICARE) meeting convened on June 27, 2011 to provide an occasion for member organizations to share information about ongoing and planned epilepsy research activities, initiatives and resources. The meeting also offered a forum to discuss ongoing challenges and opportunities. Dr. Story Landis (NINDS Director, ICARE Chair) opened the meeting with an overview of the group’s history and goals. Emphasis was placed on the importance of building new and strengthening existing partnerships between member organizations. Dr. Landis highlighted several current and planned initiatives by the NINDS that promote epilepsy research, including the Epilepsies EUREKA program, the targeted Translational Program for Resistant Epilepsy and Epileptogenesis, and the new Epilepsy Centers without Walls Program.

The presentations began with a summary of 2010 advances in the Epilepsy Benchmarks research areas. Dr. Anne Berg, one of the Epilepsy Benchmarks stewards, highlighted areas of progress and ongoing challenges and opportunities. Individual ICARE member organizations then presented brief updates of ongoing and planned research initiatives, challenges and opportunities for collaboration. The current efforts of Vision 20/20 and the Institute of Medicine study on The Public Health Dimensions of the Epilepsies were also discussed. Slideshow presentations from the meeting are available below and include more detailed information. The group discussions highlighted a number of issues relevant for the epilepsy research and patient communities including:

  • Although the risk of developing epilepsy increases progressively during aging, there is little known about the underlying mechanisms or additional risk factors.
  • Treatments of comorbidities associated with epilepsy remain problematic. Cognitive impairment and mood disorders may go untreated due to fears of exacerbating seizures.
  • The Epilepsy Benchmarks outline the research community’s priorities over the next several years, and are updated on a regular basis. New areas that could be considered for the next Benchmarks update are personalized medicine approaches for epilepsy patients, sleep related comorbidities, and epilepsy in the aging population.
  • A need to translate research into interventions and policies and to ensure a broad distribution to healthcare providers and patients, in particular those that are outside the epilepsy research community. Assessing the outcome of these education efforts is also essential.
  • Developing a common message or set of messages that accurately conveys the seriousness of epilepsy, the range of outcomes and the urgent needs of the research and patient communities.

The afternoon session focused on Sudden Unexpected Death in Epilepsy (SUDEP) and began with a discussion on the current state of SUDEP research by Dr. Sam Wiebe and a summary of the review goals established during the 2008 NINDS workshop on SUDEP and the AES/EF SUDEP Task Force by Dr. Elson So. Ongoing and planned initiatives focused on advancing research into SUDEP were then presented by the ICARE member organizations. More detailed information is available in the slideshows below. Some of the discussion highlights included:

  • Ensuring accurate diagnosis of epilepsy and SUDEP is essential to any future population-based studies or surveillance. National mortality data is generally insensitive to epilepsy as a comorbid condition at death.
  • Identification of biomarkers and surrogate endpoints are critical for developing models of SUDEP and successful interventions, as well as accurately identifying the populations with the greatest risk.
  • Several patient registries are underway to investigate the risk factors associated with SUDEP including: Ion Channels in Epilepsy, the MORTEMUS project, and a Registry of Pediatric SUDEP.
  • Work on device development is moving forward including systems that will alert caregivers that a seizure is occurring and seizure advisory systems to warn patients of imminent seizures.
  • Physicians, caregivers and patients would benefit from increased education and awareness of SUDEP.

Member Reports