Bleeding Disorders Research Collaborative: an opportunity for impact

Area of Science:

• Medical Research
• Public Health Initiatives
• Community Engagement

Background:

• The National Research Blueprint outlines a new Bleeding Disorders Research Collaborative (BDRC).
• This initiative is driven by community-identified unmet needs in inheritable bleeding disorders.
• The National Bleeding Disorders Foundation (NBDF) led a five-year co-creation process involving diverse stakeholders.

Purpose of the Study:

• To propose a novel research collaborative structure for inheritable bleeding disorders.
• To integrate principles of people, priorities, and community-driven needs.
• To foster health equity, diversity, and inclusion within research.

Main Methods:

• Seven multidisciplinary working groups convened to develop the blueprint.
• The blueprint incorporates research and development, workforce, infrastructure, community engagement, policy, lived experience expertise, and health equity.
• Emphasis on education, training, and mentorship for diverse research teams.

Main Results:

• A comprehensive blueprint for the Bleeding Disorders Research Collaborative (BDRC) has been drafted.
• The proposed collaborative aims to engage the entire inheritable bleeding disorders community.
• Focus on empowering diverse research teams through respectful partnerships.

Conclusions:

• The BDRC has the potential to transform inheritable bleeding disorders research.
• Its collaborative infrastructure centers lived experience and health equity.
• The initiative aims to efficiently advance health justice for the bleeding disorders community.