Interagency Collaborative to Accelerate Research on Epilepsy (ICARE) Meeting 2012

June 27, 2012 | 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, 2012

Time Agenda Item
8:00 AM Welcome and meeting goals
Story Landis, Ph.D., Director, NINDS
8:15 AM

Introductions of Participants

8:35 AM

Epilepsy research in the IOM report, “Epilepsy Across the Spectrum: Promoting Health and Understanding”(pdf, 450 KB)
Joan Austin, DNS, RN, FAAN, Indiana University School of Nursing

Information updates from members
9:15 AM

NINDS/NIH(pdf, 246 KB)(pdf, 246 KB)
Brandy Fureman, PhD, Program Director, NINDS

NINDS Anticonvulsant Screening Program (ASP)(pdf, 156 KB)
Story Landis, PhD, Director, NINDS

9:40 AM Department of Health and Human Services (HHS)(pdf, 82 KB)
Wanda Jones, DrPH, Principal Deputy Assistant Secretary for Health
9:50 AM American Epilepsy Society (AES)(pdf, 256 KB)
Frances Jensen, MD, 2012 President
10:00 AM Citizen's United for Research in Epilepsy (CURE)(pdf, 82 KB)
Susan Axelrod, President and Founder
10:15 AM BREAK
10:30 AM Tuberous Sclerosis Alliance (TS Alliance)(pdf, 86 KB)
Steven L. Roberds, PhD, Chief Scientific Officer
10:40 AM Centers for Disease Control and Prevention (CDC)(pdf, 155 KB)
David Thurman, MD, PhD, National Center for Chronic Disease Prevention & Health Promotion
10:50 AM Epilepsy Foundation(pdf, 125 KB)
Tracy Casteuble, Senior Director of Research
11:00 AM Vision 20/20(pdf, 507 KB)
Ilene Penn Miller, 2012 liaison, Hope for Hypothalamic Hamartomas
11:10 AM Department of Veterans Affairs (VA)(pdf, 254 KB)
Robert Ruff, MD, PhD, National Director for Neurology
11:20 AM Epilepsy Study Consortium(pdf, 172 KB)
Dennis Dlugos, MD, MSCE, The Children's Hospital of Philadelphia
11:30 AM Discussion: research needs and opportunities for organizational collaboration
12:00 PM ---- Lunch (on your own) ----

Comorbidities of the Epilepsies: opportunities for research and collaboration

1:15 PM Comorbidities overview
Amy Brooks-Kayal, MD, Children's Hospital Colorado/University of Colorado Denver
1:35 PM

ICARE members’ research programs and opportunities
NINDS/NIH: NIH Support of Research on the Co-Morbidities of Epilepsy(pdf, 271 KB)
Vicky Whittemore, PhD, Program director, NINDS, epilepsy

TS Alliance: Steven Roberds, PhD

NIMH: Comorbid Conditions Associated with Epilepsy Mental Health Conditions(pdf, 122 KB)(pdf, 122 KB) (pdf, 119 kb)
Douglas Meinecke, PhD, Clinical Neuroscience Research Branch

CDC: CDC-supported Research on Comorbidities of Epilepsy(pdf, 437 KB)(pdf, 437 KB) (pdf, 427 kb)
David Thurman, MD, PhD

HRSA: Knowledge and Access to Care in Families of Youth with Epilepsy on Ohio(pdf, 294 KB)(pdf, 294 KB) (pdf, 288 kb)
Deanna McPherson, MPH, CHES, Maternal and Child Health Bureau

2:30 PM

Moderator: Amy Brooks-Kayal, MD


Post-traumatic Epilepsy: research at the VA(pdf, 3197 KB)

3:15 PM

Overview of Priority Research Activities
Karen Parko, MD, National Director, VA Epilepsy Centers of Excellence

3:20 PM Current VA Post-traumatic Epilepsy Research Portfolio
Alan Towne, MD, VA Epilepsy Centers of Excellence Clinical Research Workgroup
Director Hunter Holmes McGuire VA Medical Center Epilepsy Center of Excellence
3:30 PM

Current DoD/DARPA Post-traumatic Epilepsy Research
Ramon Diaz-Arrastia, MD, PhD, Director of Clinical Research Center for Neuroscience and Regenerative Medicine
Professor of Neurology Uniformed Services University of the Health Sciences

3:40 PM

Research involving existing VA data-past, present, future
Mary Jo Pugh, PhD, Research Health Scientist South Texas Veterans Health Care System
Associate Professor, Department of Epidemiology and Biostatistics Department of Medicine, Geriatrics and Gerontology
University of Texas Health Science Center at San Antonio

Focus on unmet needs

3:50 PM Preventing Epilepsy after TBI: the need for clinical trials
Marc Dichter, MD, PhD, Chair of the National Professional Advisory Board for the VA ECoE Professor of Neurology and Pharmacology
Director of the Mahoney Institute of Neuroscience, University of Pennsylvania
4:00 PM VA usage patterns of neurosurgical treatment modalities for PTE
Karen Parko, MD
4:05 PM

PNES in Veterans and its relationship to TBI and PTSD
Hamada Hamid, DO, MPH, Co-Director VA Epilepsy Center of Excellence in West Haven, CT
Instructor in Neurology and in Psychiatry Yale School of Medicine

Focus on selected projects

4:15 PM PatientsLikeMe: VA Partnership Research
Arianne Graham, MBA, Business Development PatientsLikeMe
4:25 PM Long-Term Ambulatory EEG Monitoring of Veterans and Military Personnel with TBI: A Clinical Study Opportunity
W. Douglas Sheffield VMD, PhD, Vice President of Clinical Research NeuroVista
4:35 PM Discussion
5:00 PM Adjourn


The third annual ICARE meeting was held on June 27, 2012, and included invited speakers on selected topics, as well as an opportunity for individual ICARE members to give general updates on their ongoing and planned epilepsy research activities. Many presentations from the meeting are available as links on the agenda.

The meeting began with a presentation on research-related recommendations and priorities in the IOM report, “Epilepsy across the Spectrum: Promoting Health and Understanding,” given by Joan Austin, DNS, RN, FAAN, Distinguished Professor emerita at the Indiana University School of Nursing and member of the IOM.  Following  the presentation, ICARE members and other meetings participants discussed ongoing efforts, opportunities, and challenges related to addressing needs identified in the report.  In particular, meeting participants discussed the recommendation to develop formal accreditation for epilepsy centers, which would meet specific criteria for epilepsy care and could work together to conduct clinical and health services research. Existing accredited centers in other disease areas, such as stroke, were cited as potential models, in terms of the process used to develop accreditation criteria; and ongoing efforts to develop common data elements and standard definitions and methods for epidemiologic and surveillance researchwere cited as resources. Other discussion topics included the continued need for better data on the incidence and prevalence of the epilepsies and challenges and opportunities associated with the use of electronic health records to capture point-of-care data from clinical encounters.     

The first afternoon session focused on the comorbidities of epilepsy.  Amy Brooks-Kayal, MD, of the Children’s Hospital Colorado, gave an overview of comorbid conditions that affect people with epilepsy, with an emphasis on cognitive and mental health conditions.  Results from a number of studies underscore that such comorbid conditions have a significant impact on quality of life for people with epilepsy, often even more so than degree of seizure freedom.   A growing body of research points to bidirectional mechanisms in the development of comorbidities. In other words, they may be a consequence of seizures once epilepsy develops, or underlying mechanisms may exist that cause both epilepsy and comorbid conditions; and a combination of these processes may also be involved.  ICARE members described ongoing research activities related to epilepsy comorbidities, and they discussed areas of remaining needs and/or opportunity, including developing biomarkers related to the risk of epilepsy and comorbidities, incorporating epilepsy into research with a primary focus on comorbid conditions themselves, and making use of non-medical data sources, such as school records, which could inform research.

The second afternoon session focused on post-traumatic epilepsy (PTE).  Karen Parko, MD, National Director of the Department of Veterans Affairs (VA) Epilepsy Centers of Excellence , led a series of presentations on current research within the VA and DARPA/Department of Defense; data infrastructure at the VA and examples of research uses and future opportunities; and ongoing and proposed research partnerships with PatientsLikeMe and NeuroVista. The number of veterans with seizures is increasing, a trend that is expected to continue with the development of epilepsy in veterans with traumatic brain injuries (TBI) sustained in recent and ongoing military operations.  Veterans with TBI also have an increased risk for developing psychogenic/non-epileptic seizures, which may outwardly resemble seizures but are not accompanied by the abnormal brain electrical activity that characterizes epileptic seizures.  The VA system and data infrastructure provide a unique resource for clinical research on PTE, including research to improve quality standards for care delivery. Additional topics discussed included an apparent disparity in the use of surgical therapies for epilepsy in veterans with respect to the general population, factors that may predict or contribute to the risk for PTE, the development of interventions to prevent PTE, and needs for epidemiologic surveillance and monitoring long term outcomes.