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Neurobiol Dis. 2019 Mar;123:137-144. doi: 10.1016/j.nbd.2018.07.007. Epub 2018 Jul 18.

Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy.

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Saul R. Korey Department of Neurology, Albert Einstein College of Medicine and Montefiore Medical Center, 1410 Pelham Parkway South, K-312, Bronx, NY 10461, USA. Electronic address:
Department of Neurology, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1137, New York, NY 10029, USA.
Brain Injury Association of America, 1608 Spring Hill Rd # 110, Vienna, VA 22182, USA.
Epilepsy Foundation, 8301 Professional Place East Suite 200, Landover, MD 20785, USA.
National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA.
Departments of Neurosurgery and Psychiatry & BioBehavioral Sciences; David Geffen School of Medicine; University of California, Los Angeles, CA, USA.
Saul R. Korey Department of Neurology, Dominick P. Purpura Department of Neuroscience and Department of Pediatrics, Albert Einstein College of Medicine and Montefiore Medical Center, 1410 Pelham Parkway South, K-312, Bronx, NY 10461, USA.


The increased focus on stakeholder engagement in determining the aims, design, conduct of research and dissemination of results is substantially changing the biomedical research paradigm. In this era of patient-centered care, incorporating participatory action research methodology into large-scale multi-center studies is essential. The adoption of community engagement facilitates meaningful contribution to the design and implementation of clinical studies. Consequently, encouraging citizen participation and involving key organizations may guide the effective development of future clinical research protocols. Here, we discuss our experience in engaging individuals, their caregivers, as well as scientific and consumer organizations in public outreach and knowledge transfer to assist in the development of effective strategies for recruitment and retention in a future post-traumatic epilepsy prevention randomized controlled trial within the National Institute of Neurologic Disorders and Stroke Center Without Walls, Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx). The study includes a Public Engagement Core with a diverse consortium of stakeholder partners. Based on the Core's ongoing experience, it is recommended that multicenter studies integrate a participatory action research based approach to harness the benefits of a collective inquiry. The blueprint created by the EpiBioS4Rx Public Engagement Core is a resource that could be applied in other areas of biomedical research.


Clinical trials; Community engagement; Epilepsy; Participatory action research; Patient reported outcomes; Patient-centered outcomes; Post-traumatic epilepsy; Traumatic brain injury

[Available on 2020-03-01]

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