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ICARE: March 24, 2014 Meeting

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

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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


Dr Story Landis opened the fourth meeting of the ICARE, or Interagency Collaborative to Advance Research in Epilepsy group on March 24, 2014.  She reminded members that the major goals of annual ICARE meetings are to share information about epilepsy research activities and future plans and to discuss research needs and opportunities for collaboration. Updates on epilepsy-related activities from members of ICARE have been compiled into a single report, and selected presentations from new members of ICARE, or members with significant new activities, are available as links on the agenda.

Dr Landis stated that the April 2013 Curing the Epilepsies conference resulted in new Benchmarks for Epilepsy Research, which were developed with public input and are posted on the NINDS website. The Benchmarks represent a community-wide research agenda for epilepsy over the next several years. Dr Landis also discussed two areas of concern. First, there was a $27 million dollar drop in NIH-wide epilepsy research spending between FY2012 and FY2013, according to the NIH Research, Condition, and Disease Categories (RCDC) reporting system (Spending by NINDS in the same timeframe dropped by $14 million). NINDS staff analyzed the factors that lead to this drop, which included accounting changes that affected which projects were included in the epilepsy category, sequestration cuts that influenced funding levels for ongoing and new projects, and programmatic termination of a few large projects for various reasons. Dr Landis also noted a declining trend in the number of epilepsy-related mentored physician-scientist career development awards (K awards) since FY2008. NINDS staff is currently analyzing data on application numbers and success rates to see whether this decline results from fewer applications, or from fewer competitive applications submitted by highly-qualified applicants.

Highlights from the morning update presentations included:

  • several opportunities for collaboration with the CDC’s National Center on Birth Defects and Developmental Disabilities
  • existing tools for epilepsy self-management that are available for dissemination, developed with support from the Epilepsy Program in the Division of Population Health of the National Center for Chronic Disease and Disease Prevention
  • updates on the collaborative Infantile Spasms Initiative sponsored by Citizen’s United for Research in Epilepsy (CURE)
  • a summary of the “Alcohol Use Disorders and Epilepsy” workshop sponsored by the National Institute of Alcohol Abuse and Alcoholism (NIAAA)
  • a description of the epilepsy-related projects supported by the Patient Centered Outcomes Research Institute (PCORI)
  • a demonstration of two web-based tools developed through the efforts of the Vision 20/20 organization: the HERO website for clinical trial education and recruitment, and the My Seizures, Know More website for patients.

At the conclusion of these update presentations, Dr Howard Koh, MD, Assistant Secretary for Health, Department of Health and Human Services thanked the ICARE group for its on-going commitment to improving the lives of people with epilepsy through research advances.

The afternoon session focused on a discussion of whether a community-wide portfolio analysis of epilepsy research funding would be a useful and feasible endeavor for the ICARE group to undertake. Although a portfolio analysis would require resources, especially in terms of time, from each ICARE member organization, it may be an excellent way to monitor trends in support across organizations, identify gaps, synergies, and opportunities for coordination or collaboration, and serve as a resource for identifying appropriate individuals for review panels, workshops, and working groups, among other benefits. Dr Linda Porter, the NIH Health Science Policy Advisor for Pain, described an analysis of the Federal pain research portfolio by the Interagency Pain Research Coordinating Committee (IPRCC). The IPRCC used defined terms to uniformly code the research portfolios of all Federal IPRCC member organizations, and they also grouped coded portfolios into thematic areas.  They plan to continue the analysis on an annual basis and have developed a publicly searchable database that can be used by the pain research community at large to identify new opportunities, gaps, or resources. Dr Cara Long presented examples of other approaches to analyzing disease research funding portfolios, including those used by the autism, Alzheimer’s disease, and cancer research communities.

The ICARE members discussed the potential benefits of a shared framework for categorizing research according to scientific areas and types of support (e.g., basic, translational, clinical research; research projects, training and career awards, resources).  Most saw sufficient benefit to recommend that ICARE members take on such an effort. Dr Landis requested volunteers for a working group of ICARE members who would develop a more detailed proposal for discussion with the larger group. The proposal should include recommendations for the questions that members would like to see addressed by the analysis, the categories to be used, the process for conducting the analysis and interpreting results, and the frequency with which such an analysis could be usefully and feasibly conducted.  In addition to analyzing the content of funded research portfolios, many members expressed interest in mapping funding opportunities across organizations, to help epilepsy researchers at different career stages identify potential sources of support and to help organizations identify opportunities for coordination and collaboration.  Further discussions of this idea are being led by Vision 20/20 member organizations.    

Last Modified October 20, 2015