Social and Behavioral Sciences Commons^™

2484: Establishment Of The Tennessee-Sickle Cell Disease Network As A Mechanism For Engaging A Rare Disease Population In Patient Centered Outcomes Research, Tilicia Mayo-Gamble, Velma Mcbride Murry, Michael R. Debaun

Department of Health Policy and Community Health Faculty Publications

OBJECTIVES/SPECIFIC AIMS: Despite the high prevalence of individuals diagnosed with sickle cell disease (SCD) in Tennessee, comprehensive care and education for patients with SCD is not as widely available as healthcare services for individuals managing other chronic illnesses. We aimed to engage SCD stakeholders in patient-centered outcomes research (PCOR) as a mechanism for advancing care and translational research for this rare disease population. METHODS/STUDY POPULATION: Through a partnership with the Sickle Cell Foundation of Tennessee, we implemented Community Health Ambassadors to systematically engage patient partners with SCD and their caregivers, aged 18–50 from rural and urban communities throughout Tennessee, in …