The ASH Research Collaborative’s (ASH RC) shared vision for community engagement includes potential participants, their caregivers, and SCD-related community and faith-based organizations. Community advisory boards and volunteer working groups are locally based, near the clinical research sites, and are the foundation of our network. Involving the community early and in a meaningful way allows us to foster a culture of collaborative engagement and research, co-create educational materials with the community, implement community-first approaches to research, and empower the SCD community to make informed decisions about their care.
ASH RC’s shared vision for community engagement will address many of the common barriers faced in clinical trials research by helping the community to overcome barriers to participation, involving the SCD community in research design, and education on informed decision-making.
The Community Advisory Boards (CABs) are foundational to the success of this network. The goal is for our CABs to provide a safe and supportive platform for community members to assemble and discuss matters regarding the priorities of the local and national community and provide input on clinical trials processes and protocols.
Our CAB model consists of the local CAB, where members of the community who are central to the clinical trials sites are located. Two representatives from each local CAB will be elected to participate in the ASH RC’s National CAB. This approach helps to make sure that there is a bi-directional flow of information from the local to national level.
Members of the National CAB will also serve on our Initial Protocol Working Group, where all protocols brought to the Network will be evaluated before filtering down to the local CAB community.