The National Research Blueprint (NRB) was a U.S. National Bleeding Disorders Foundation (NBDF) initiative to better understand all facets impacting research and to set the foundation for what and how inheritable bleeding disorders research should be done in the future. The personal journeys of Lived Experience Experts (LEEs), individuals living with disorders, are highly valuable. It is critical to incorporate them throughout all stages of future research. The NRB made sure LEEs were heard from the very beginning of the development process and throughout. The goal was to place diverse LEEs from across the community at the center of research, with all collaborative partners recognizing LEEs as equal partners.
One NRB working group developed a list of priorities to make future inheritable bleeding disorders research more inclusive and reflective of the community. They combined community input and medical, research, and lived experience expertise to choose 327 top research priorities. They ensured all priorities were feasible.
Another working group conducted a survey of the current workforce at bleeding disorders centers, often called hemophilia treatment centers (HTC). They asked the different professionals about their interest, capacity, and barriers in doing research. Based on the results, they proposed training and resources needed to develop a diverse workforce that can ensure successful future research.
There is a great potential for collaborative research across the country. HTCs can act as hubs in a network of national partnerships. The incorporation of LEEs as valued partners in this Bleeding Disorders Research Collaborative is imperative. Cross-training of LEEs, HTC professionals, and other researchers will be necessary to ensure its success.