Interagency Collaborative to Accelerate Research on Epilepsy (ICARE) Meeting 2022

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.

Related Resources

Agenda and Presentations

Member Reports

Member Update Reports(pdf, 1027 KB)

Summary

The eleventh annual ICARE meeting was held on May 26^th, 2022. The Director of the NINDS, Dr. Walter Koroshetz, opened the meeting with introductions and highlighted some of the accomplishments and collaborative opportunities of ICARE members, documented in the ICARE member reports (submitted prior to the meeting).  Dr. Vicky Whittemore, Program Director at the NINDS, provided an update on the Federal budget outlook for the NIH and NINDS as well as specific details on epilepsy research highlights from NINDS. Next, Dr. Steve Roberds, Chief Scientific Officer at the TSC alliance, Dr. Melissa Miller, Program Manager at the CDMRP-ERP, and Dr. Nora McGhee, Senior Program Officer at PCORI, provided updates on epilepsy supported research from their respective organizations and agencies. The morning session was concluded by the presentation of the annual ICARE epilepsy research portfolio analysis by Dr. Joseph Hall, Health Program Specialist at the NINDS, and Dr. Miriam Leenders, Program Director at the NINDS.

After a lunch break, the ICARE meeting continued with the main theme on diversity, equity and inclusion in Epilepsy research and care.  Dr. Adeola Sonaike, a board member of Epilepsy Alliance America, opened the session by providing a patient/advocate perspective. She highlighted personal experiences regarding the issues in access and affordability to healthcare. Next, Dr. Richard Benson, Director of the NINDS Office of Global Health and Health Disparities, spoke on the commitment of NINDS to reduce the disproportionate burden of neurological disease borne by underserved groups of society by developing a comprehensive plan to guide research investments over the next 5-10 years using the health disparities framework. In the keynote lecture Dr. Dave Clarke, Professor of Neurology and Pediatrics Dell Medical School at the University of Texas at Austin, highlighted the health disparity gaps that exist in access to healthcare from epilepsy diagnosis to treatment and care. Dr. Clarke presented recent data showing that there is a large gap in access to healthcare in the US. Most notable, the data indicate that those with low socioeconomic status, lack of insurance, and minorities have less access to specialized care and had higher rates of general visits, ER care and hospitalizations.  Dr. Clarke ended his lecture by emphasizing that one of the factors that might help reduce disparities in care will be to increase minority representation among clinicians and researchers, as recent studies indicate that representation is still lacking. Next, Jessica Teel, Senior Public Health Analyst in the division of services for children with special needs at HRSA, gave a brief overview of the HRSA Epilepsy program focused on improving access to care for children and youth with epilepsy residing in rural and/or medically underserved areas. She introduced one of the program’s funded investigators, Dr. Laurie Douglas, associate professor of Pediatrics and Neurology at Boston University and PI for the Telehealth Epilepsy Care Collaborative at Boston Medical Center. Dr. Douglas introduced their program’s central mission to reduce barriers to care and ensure quality treatment is available to all patients living with epilepsy. Key areas of focus include addressing the comorbid mental health conditions, transition processes for youth, and the development of online engagement modalities to support patients and families. Dr. Douglas discussed leading a community needs assessment to understand and recognize the lived experiences, needs, priorities and values of patients and families of color and Spanish-speaking families. She and members of her team subsequently described a number of engagement practices and community building designed at improving health literacy and developing a peer social support network based on the lessons learned from the needs assessment. Eileen Murray, Executive Director of the AES, presented a CDC funded AES project aimed at disrupting disparities: documenting and addressing gaps in epilepsy care through healthcare provider education and training. Specifically, the AES will leverage quality evidence-based epilepsy education to improve clinical treatment management skills of non-specialist providers who are treating persons with epilepsy and gain a better understanding of the social determinants of health and commitment to epilepsy self-management by the specialist workforce. Dr. Joaquin Lugo, member of the AES DEI committee, discussed several new AES initiatives to improve diversity, equity, and inclusion. These include a recent internship pilot aimed at providing meaningful research experiences for undergraduate students from underrepresented groups, a new AES award to support early career physicians and scientists who identify as members of underrepresented groups in medicine and research, and the ACGME CMSS Equity Matters Initiative. This initiative focuses on enacting change within graduate medical education by increasing physician workforce diversity and building safe and inclusive learning environments, while promoting health equity by addressing racial disparities in health care and overall population health. The session ended with a general discussion highlighting the breadth of projects and initiatives presented by the speakers, while also acknowledging the need for continued efforts to understand and reduce health disparities in epilepsy, and to diversify the epilepsy physician and research workforces.