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
|9:00 AM – 9:20 AM|
|9:20 AM – 9:30 AM||
Introduce new ICARE Members
|Highlights from ICARE members|
|9:30 AM – 9:45 AM||National Center on Birth Defects and Developmental Disabilities, CDC(pdf, 762 KB)
Rosemarie Kobau, NCCDPHP/CDC
|9:45 AM – 10:00 AM||Epilepsy Program, Division of Population Health, CDC(pdf, 764 KB)
Rosemarie Kobau, NCCDPHP/CDC
|10:00 AM – 10:15 AM||Citizens United for Research in Epilepsy: Infantile Spasms Initiative(pdf, 541 KB)
Julie Milder, CURE
|1015 AM – 10:30 AM||Alcohol Use Disorders and Epilepsy(pdf, 1497 KB)
Qi-Ying Liu, NIAAA/NIH
|10:30 AM – 10:45 AM||BREAK|
|10:45 AM – 11:00 AM||Patient-Centered Outcomes Research Institute(pdf, 902 KB)
(Sarita Wahba, PCORI)
|11:00 AM – 11:15 AM||Vision 20/20(pdf, 566 KB); Epilepsy resources, HERO, and My Seizures, Know More websites(pdf, 601 KB)
Joan Austin, Vision 20/20 and Rob Moss, SeizureTracker.com
|11:15 AM – 11:30 AM||Assistant Secretary for Health, U.S. Department of Health and Human Services
Howard K. Koh, M.D., M.P.H., HHS
|11:30 AM – 12:30 PM||Lunch (on your own/small group meetings)|
Community-wide Epilepsy Research Portfolio Analysis
|12:30 PM||Introduction: Proposal for a shared portfolio analysis|
|12:30 PM – 12:40 PM||
Overview of portfolio analyses and examples from other disease areas(pdf, 313 KB)
|12:40 PM – 1:00 PM||
Interagency Pain Research Coordinating Committee: Analysis of the Federal Pain Research Portfolio(pdf, 641 KB)
|1:00 PM – 2:15 PM||
|2:15 PM – 2:30 PM||
Wrap-up and adjourn main meeting
|2:30 PM – 3:00 PM||Post-meeting Opportunities for small group meetings and networking
Tutorials/demonstrations: Room 3310 (NIH REPORTER, RCDC, and Epilepsy Resource Connection)
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(pdf, 607 KB), 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(pdf, 171 KB) . 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(pdf, 762 KB) 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(pdf, 762 KB) in the Division of Population Health of the National Center for Chronic Disease and Disease Prevention
- updates on the collaborative Infantile Spasms Initiative(pdf, 541 KB) sponsored by Citizen’s United for Research in Epilepsy (CURE)
- a summary of the “Alcohol Use Disorders and Epilepsy(pdf, 1512 KB) ” workshop sponsored by the National Institute of Alcohol Abuse and Alcoholism (NIAAA)
- a description of the epilepsy-related projects(pdf, 902 KB) 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(pdf, 566 KB) 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(pdf, 641 KB) 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(pdf, 313 KB) 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.
Member Update Reports(pdf, 607 KB)