COMPASS was designed to provide a platform to directly involve the sickle cell patient and caregiver community in patient-driven research. All projects, initiatives and platforms of the Sickle Cell Community Consortium are created and powered by the sickle cell “warrior” community. Birthed out of community desire to have a seat at the table (and not just a voice in the crowd), this initiative engages our existing network of community-based organization (CBO) partners and extensive database of registered patient/caregiver advocates, to generate a list of patient-identified research priorities and CER questions through engagement, education and empowerment. The findings will be used to inform researchers, physicians, policy makers, funding agencies, community-based organizations and other entities about the research needs of sickle cell patients using the patients’ VOICE and prepare sickle cell CBOs for participating in CER research projects.
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