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

Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy. Neurobiol Dis. 2018 Jul 18;: Authors: Correa DJ, Kwon CS, Connors S, Fureman B, Whittemore V, Jetté N, Mathern GW, Moshé SL, EpiBioS4Rx Public Engagement Core Abstract 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 stak...
Source: Neurobiology of Disease - Category: Neurology Authors: Tags: Neurobiol Dis Source Type: research