Sickle Cell Disease (SCD) is the most common genetic disease affecting African Americans in the U.S. SCO contributes to significant morbidity and mortality among affected persons. Researchers report difficulty in recruiting adults with SCD for participation in medical research. This study will examine willingness to participate in medical research among adults with SCD. Focus groups and a cross-sectional survey will be used to answer four research questions: 1) What are the beliefs and concerns towards participation in medical research expressed by adults with SCD? 2) Do levels of trust in physicians (interpersonal trust) and medical institutions (institutional trust) differ between adults with SCD receiving care at a historically black medical institution and those that are not? 3) Does willingness to participate in medical research differ between adults with SCD receiving care at a historically black medical institution and those that are not? 4) What factors will be associated with the adult SCD patient's willingness to participate in medical research? Results of the study will be used to better understand those factors associated with research participation among adults with SCD.
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