At the recent National Bleeding Disorders Foundation conference in Atlanta, a revolutionary approach to medical research took center stage. The National Research Blueprint (NRB) is set to transform how we understand and treat bleeding disorders, with patients themselves at the helm.
Gone are the days of research confined to sterile labs. The NRB brings the process into the living rooms of those who matter most: the patients. "We're not just subjects anymore," says Sammy Thompson, a conference attendee living with hemophilia. "We're partners in this journey."
Dr. Sarah Johnson, lead coordinator of the NRB, outlined the initiative's three-phase plan: Define research priorities, develop infrastructure for patient participation, and implement the strategies. "This isn't just about finding better treatments," Dr. Johnson explains. "It's about understanding the entire journey of living with a bleeding disorder."
The heart of this revolution lies in the introduction of Lived Experience Experts (LEEs). These individuals, living with bleeding disorders, are now active participants in every stage of research. Their involvement ensures that the right questions are being asked and the most relevant answers are being sought.
Guided by principles of people-centricity, collaboration, health equity, and diversity, the NRB is broadening the scope of research. It goes beyond basic science, tackling areas like improved diagnostics, adaptive therapeutics, and health equity challenges.
As the conference wrapped up, attendees eagerly signed up for the Community-Based Research registry and advisory panels. The excitement was palpable, with Dr. Johnson concluding, "This is just the beginning. We're not just changing research—we're changing lives."
For those living with bleeding disorders, this new approach offers more than hope. It provides a voice and a hand in shaping their own futures. As the medical community watches closely, the NRB may well become a model for patient-centered research across all fields of medicine.
Breaking Barriers: How LEEs are Shaping Bleeding Disorders Research
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- GWCC | Meeting Room B305 - Level 3
