COMPASS was designed to provide a platform to directly involve the sickle cell patient and caregiver community in patient-centered research. All projects, initiatives, and platforms of the Sickle Cell Community Consortium are created and powered by the sickle cell “warrior” community. Born out of a community desire to have a seat at the table (and not just a voice in the crowd), this initiative will engage our existing network of 31 community-based organization (CBO) partners and extensive database of registered patient/caregiver advocates to generate a list of patient-identified research priorities and comparative effectiveness research (CER) questions that will bring about engagement, education, and empowerment. The findings will be used to inform researchers, physicians, policy makers, funding agencies, CBOs, and other entities about the research needs of sickle cell patients; the project will use the patients’ voice, and it will prepare sickle cell CBOs for participating in CER projects.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.