The American Society of Hematology Research Collaborative (ASH RC) Community Advisory Board (CAB) is a dedicated assembly of patients, caregivers, and community advocates committed to transforming the landscape of Sickle Cell Disease (SCD) research. Built on the principles of Community-Based Participatory Research (CBPR), the CAB serves as the vital bridge between clinical investigators and the lived experiences of those affected by SCD.
Our Mission
To ensure that research is not just conducted on the community, but with and for the community. By integrating the voices of individuals and families into every stage of the scientific process, we strive to make SCD research more ethical, equitable, and aligned with the real-world needs of patients.
What We Do
The CAB acts as a strategic partner to research institutions (such as St. Jude) and the ASH RC National Network. Our core functions include:
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Setting the Agenda: We provide direct guidance on research priorities, ensuring that scientists focus on the issues that matter most to patients.
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Refining Research: We review study designs and materials to ensure they are feasible, culturally respectful, and easy for families to understand.
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Bridging the Gap: We advise on recruitment strategies to improve representation and foster trust between researchers and the SCD community.
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National Representation: Through our local board, we elect representatives to the National CAB, ensuring that local insights inform hematology research on a global scale.
Our Commitment
We believe that the path to a cure and better treatments must be paved with transparency and inclusion. Through quarterly collaboration and ongoing education, the CAB empowers the SCD community to be active leaders in the pursuit of medical progress.
At its heart, the CAB is the conscience of the research process—ensuring that every clinical trial and scientific inquiry remains grounded in the dignity and lived reality of the Sickle Cell community.
