Jill M. Johnsen, Tyler W. Buckner, Glaivy Batsuli, Samantha Carlson, Erin Burke Cirelli, Donna DiMichele, Veronica H. Flood, Andrew D. Johnson, Meadow Heiman, Justine Kaplan, Barbara A. Konkle, Bernard Khor, Emily W. Lankau, Gallia G. Levy, Keri L. Norris, Glenn F. Pierce, Nicholas A. Popp, Michael Recht, Jonathan Roberts, Fiona Robinson, Maria E. Santaella, Jordan A. Shavit, Raymond W Stanhope, Sammie Valadez, Michelle Witkop, Lynn Malec, Amy D. Shapiro
The BDRC seeks to capacitate a diverse, inclusive, collaborative workforce, and effectively accelerate research that advances health equity for all.
BACKGROUND: Inheritable bleeding disorders (BDs) research has not historically reflected the diversity or needs of the entire community. The National Bleeding Disorders Foundation charged seven multidisciplinary working groups (WGs) with developing a U.S. National Research Blueprint (NRB) for a Bleeding Disorders Research Collaborative (BDRC) inspired by Lived Experience Experts (LEE) and grounded in health equity, diversity, and inclusion (HEDI). RESEARCH DESIGN AND METHODS: The Research and Development and Workforce WGs, in collaboration with the HEDI and LEE WGs, met virtually and in-person to develop recommendations for BDRC operationalization. RESULTS: An agenda of 327 feasible research priorities spanning nine main topics, each with four to six scientific areas of interest is proposed. It captures the hope that new diagnostic and therapeutic technologies and innovative research approaches enriched by LEE and HEDI expertise may advance health equity for all. Key constraints of time, expertise, funding, resources, and diversity were identified as important barriers to the capacitation of the interdisciplinary research workforce required to successfully achieve this research. Mentorship, partnership, training and education, collaboration, and advocacy solutions to these barriers are proposed. CONCLUSIONS: The BDRC seeks to capacitate a diverse, inclusive, collaborative workforce, and effectively accelerate research that advances health equity for all.