Bleeding Disorders Research Collaborative: an opportunity for impact.

Abstract

Introduction: The National Research Blueprint proposes a Bleeding Disorders Research Collaborative (BDRC) centering people, priorities, and principles. Driven by community-identified unmet needs, the National Bleeding Disorders Foundation (NBDF) coordinated a five-year co-creation endeavor engaging a multitude of diverse stakeholders.

Areas covere: Seven multidisciplinary working groups built upon previous NBDF State of the Science Summit conclusions to draft a blueprint of the research and development, workforce, infrastructure, community engagement, policy, Lived Experience Expert, and health equity, diversity, and inclusion elements of the novel research collaborative. Implementing their proposal will engage the entire inheritable bleeding disorders community mobilizing all its expertise, resources, champions, and partners. Education, training, and mentorship will be key in empowering diverse research teams working together in respectful partnership.

Expert opinion: The proposed BDRC has the potential to transform inheritable bleeding disorders research through its collaborative infrastructure centering lived experience expertise and health equity, diversity, and inclusion to efficiently advance health justice for the entire community.