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ICARE: Meeting Agenda - June 27, 2012

Research @ NINDS
Judith Hoyer Lecture on Epilepsy

Curing the Epilepsies 2013: Pathways Forward

Resource Links
Anticonvulsant Screening Program (ASP)

NIH RePORTER is an electronic tool that allows users to search a repository of NIH-funded research projects and access publications and patents resulting from NIH funding.

Epilepsy Clinical Trials

Resources for Scientists


Brandy Fureman, Ph.D.
Program Director, Channels Synapses & Circuits Cluster

Deborah Hirtz, M.D.
Program Director, Division of Extramural Research

John Kehne, Ph.D.
Program Director, Anticonvulsant Screening Program

Randall Stewart, Ph.D.
Program Director, Extramural Research Program

Vicky Whittemore, Ph.D.
Program Director, Channels, Synapses & Neural Circuits Cluster

Interagency Epilepsy Working Group Meeting

June 27, 2012

NIH Campus

Building 31, 6th floor C wing, conference room 6

Hosted by the National Institute of Neurological Disorders and Stroke (NINDS)


8:00 a.m.
Welcome and meeting goals
Story Landis, PhD
Director, NINDS

8:15 a.m.
Introduction of Participants

8:35 a.m.

Information updates from members

9:15 a.m.
Brandy Fureman, PhD
Program Director, NINDS, epilepsy

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

9:40 a.m.
Department of Health and Human Services (HHS)
Wanda Jones, DrPH
Principal Deputy Assistant Secretary for Health

9:50 a.m.
American Epilepsy Society (AES)
Frances Jensen, MD
2012 President

10:00 a.m.
Citizen's United for Research in Epilepsy (CURE)
Susan Axelrod
President and Founder

10:15 a.m.
---- Break ----

10:30 a.m.
Tuberous Sclerosis Alliance (TS Alliance)
Steven L. Roberds, PhD
Chief Scientific Officer

10:40 a.m.
Centers for Disease Control and Prevention (CDC)
David Thurman, MD, PhD
National Center for Chronic Disease Prevention & Health Promotion

10:50 a.m.
Epilepsy Foundation
Tracy Casteuble
Senior Director of Research

11:00 a.m.
Vision 20/20
Ilene Penn Miller
2012 liaison, Hope for Hypothalamic Hamartomas

11:10 a.m.
Department of Veterans Affairs (VA)
Robert Ruff, MD, PhD
National Director for Neurology

11:20 a.m.
Epilepsy Study Consortium
Dennis Dlugos, MD, MSCE
The Children's Hospital of Philadelphia

11:30 a.m.
Discussion: research needs and opportunities for organizational collaboration

12:00 p.m.
---- Lunch (on your own) ----

Comorbidities of the Epilepsies: opportunities for research and collaboration

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

1:35 p.m.
ICARE members’ research programs and opportunities
NINDS/NIH: NIH Support of Research on the Co-Morbidities of Epilepsy
Vicky Whittemore, PhD
Program director, NINDS, epilepsy

TS Alliance: Steven Roberds, PhD

NIMH: Comorbid Conditions Associated with Epilepsy Mental Health Conditions
Douglas Meinecke, PhD
Clinical Neuroscience Research Branch

CDC: CDC-supported Research on Comorbidities of Epilepsy
David Thurman, MD, PhD

HRSA: Knowledge and Access to Care in Families of Youth with Epilepsy on Ohio
Deanna McPherson, MPH, CHES
Maternal and Child Health Bureau

2:30 p.m.
Moderator: Amy Brooks-Kayal, MD

3:00 p.m.
---- Break ----

Post-traumatic Epilepsy: research at the VA

3:15 p.m.
Overview of Priority Research Activities
Karen Parko, MD
National Director, VA Epilepsy Centers of Excellence

3:20 p.m.
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 p.m.
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 p.m.
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 p.m.
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 p.m.
VA usage patterns of neurosurgical treatment modalities for PTE
Karen Parko, MD

4:05 p.m.
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 p.m.
PatientsLikeMe: VA Partnership Research
Arianne Graham, MBA
Business Development PatientsLikeMe

4:25 p.m.
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 p.m.

5:00 p.m.

Last Modified October 20, 2015