Interagency Collaborative to Accelerate Research on Epilepsy (ICARE) Meeting 2016

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.

Location:

Main NIH Campus: Porter Building (#35A), Room 610
Hosted by NINDS

Related Resources

Agenda and Presentations

Summary

The ICARE group held its sixth annual meeting on April 14, 2016. Dr. Alan Willard, Deputy Director, NINDS opened the meeting with highlights of accomplishments and collaborative opportunities from the NIH and several ICARE member reports(pdf, 890 KB)(pdf, 890 KB) (pdf, 1048 kb) (submitted prior to the meeting). Dr. Willard also provided an update on the Federal budget outlook for the NIH and NINDS as well as some more specific details on epilepsy research and the BRAIN initiative. One of the main goals of the BRAIN Initiative is to develop tools to help researchers better study how neural networks function, and thus this initiative will likely prove especially impactful on our understanding of the epilepsies.

Dr Willard concluded his remarks by introducing a new ICARE member, the Pediatric Epilepsy Research Foundation (PERF) represented by Dr. Roy Elterman,  and several new representatives to ICARE, including Tracy King (NICHD), Sonya Jooma (NHGRI), Michael Privitera (AES), Thomas Caruso (PCORI), Christi Heck (ELC) and Brandy Fureman (EF).

Member Report Highlight: Tuberous Sclerosis Alliance - Collaborative Research Initiatives

Dr. Steve Roberds, Chief Scientific Officer TS Alliance, described the TS Alliance collaborative research initiatives. The initiatives include a natural history database and bio sample repository and pre-clinical and clinical consortiums. All are working together to support research from basic to clinical to accelerate discovery of new treatments and find a cure for TSC. Recent highlights from the programs include the successful NIH supported biomarker studies in the pre-clinical consortium which identified early markers of risk for autism and epilepsy in TSC. And the clinical consortium’s recently NINDS funded phase II trial PREVeNT, which will start in the fall of 2016 and aims to assess the developmental impact of early versus delayed treatment with vigabatrin in prevention of epilepsy.

Session I:  Community-wide Epilepsy Research Portfolio Analysis

Dr. Miriam Leenders, NINDS, opened the session by presenting the latest results from the second ICARE research portfolio analysis and gave a demonstration of the new web-based ICARE Epilepsy Research Portfolio database. The site hosts the database of all research projects supported by the ICARE members for the years 2013 and 2014. It can be searched by keyword and several categories for projects of interest and the results are displayed by project listing and customizable graphs. The results of the analysis were presented with a special focus on the structured training (training grants, fellowships) in epilepsy research, highlighting the limited support for training and demonstrating the possibilities of the database in tracking funding support and career development of epilepsy trainees.  Dr. Cara Long, Senior Manager of Research AES, continued on the theme of training by introducing the ICARE Training Working group. AES volunteered to lead this working group, which was established after the 2015 ICARE meeting discussion of the first ICARE epilepsy research portfolio analysis which showed limited support for structured training programs. The charge of the working group is twofold, one is to establish whether there are opportunities for more coordination across different training programs and the other is how best to determine if these programs are achieving their goals. To start off with the first charge, Dr. Long presented a proposal to conduct a comprehensive survey to better understand the current training programs supported by various ICARE members. After a brief discussion the ICARE group agreed that it is a necessary first step to document the current training opportunities in more detail and gave the working group the go ahead to further develop the survey and conduct it among the ICARE members within the next year. Dr. Steve Korn, NINDS, ended the session by leading an open discussion on how the non-profit organizations could have the greatest impact on training programs. Dr. Korn opened by giving his own perspective based on his personal experience as Director of the NINDS Office of Training and Career Development and Workforce Diversity. The discussion largely focused on his observations of what support is missing, namely support for workshops or mentoring of trainees in grant writing. This is needed to help trainees obtain NIH grant support and additional research seed money.  The group discussed various ideas to provide support for either for these gaps with the goal of providing more opportunities for people to pursue successful highly significant careers in epilepsy research.

Session II:  Scientific & Policy Session: Evidence Development for the Epilepsies (Learning from Individuals & Populations)

The topic of the afternoon sessions of the meeting was introduced by Dr. Jeff Buchhalter, Alberta Children’s Hospital University of Calgary. The sessions focused on the theme of improving patient outcomes in the near future by implementing organized care. The speakers of the sessions each touched upon different aspects needed for implementation of such an approach to improve epilepsy patient care. Dr.  Lee Schwamm, Mass General Hospital Harvard Medical School, presented lessons learned from the successful approach of the ‘Get With The Guidelines – Stroke Initiative’. Dr. Schwamm outlined the guiding principles of the initiative, including a commitment from a trusted organization, consensus guidelines created by experts, and quantifiable measures to document better outcomes. One of the most impactful lessons learned is to need to be able to adjust to the real world clinical practice to get maximum participation and adherence. This could also mean to shift focus towards clinically meaningful, rather than statistically significant, robust measures. Dr. Schwamm highlighted that by aligning measures, leveraging external data sources and having clear incentives for participation success was achieved through this initiative. Dr. Jeff Buchhalter and Dr. Tracy Glauser, UC Department of Pediatrics Cincinnati Children’s Hospital concluded the first afternoon session by presenting their respective clinical assessment and outcomes data informatics projects as two examples of how such systems could provide standardized measures and care for pediatric epilepsy patients. Both demonstrated the strengths and weaknesses of such systems and while they do show standardized care can be implemented for epilepsy outcomes, they also indicated that for a more broader implementation to improve care and outcomes much work is still needed to align and standardize data collection and measures across the board.

Session III:  The quality of the data extracted is directly related to the data input: Elements of structured information for epilepsy

The second session in the afternoon focused in more detail on data quality and more specifically on one of the major data input aspects, the epilepsy ontology. Dr. Oliver Bodenreider, NLM NIH, introduced the general topic of ontology. He outlined the capabilities and a strategy for how build a meaningful ontology for a complex medical field such as epilepsy. Next Dr. Sam Lhatoo and Dr. Satya Sahoo, Case Western Reserve University, and Dr. Graciela Gonzalez, Arizona State University, introduced their existing epilepsy ontologies, the EpSO and ESSO respectively.  They highlighted the complexities of developing an ontology for epilepsy, which on the one hand should appeal to and be useful to practicing physicians and researchers and on the other hand be organized and structured in a framework that is designed to be machine readable to allow for federated queries across distributed databases and patient data capturing systems.Dr. Joseph Hutter, CMS, ended the session by presenting an overview of several programs and initiatives of the Centers of Medicare and Medicaid Services, which could be of interest for the implementation of structured care to improve outcomes for epilepsy patients.

During a brief concluding discussion there was general consensus among the ICARE members that although this would be a huge and very complex undertaking that if successful could have a significant impact on the epilepsy patient population.  Therefore there was enthusiastic support for a dedicated group to further explore the possibility of this initiative, perhaps starting with a focused workshop, to assemble all stakeholders and work out details of all components necessary to launch such an initiative.

Member Report

Member Update Reports(pdf, 890 KB)