Goal 3: Advance Translational Research

Follow-up care for newborns diagnosed with sickle cell trait or disease

• There is a need to develop and support formal programs to provide follow-up care for newborns who test positive for the sickle cell trait or sickle cell disease upon screening. While newborn screening programs exist nationwide, healthcare providers report that often, screening is conducted only upon request (likely related to cost) and there is usually no follow-up afterwards. Interventions are also needed further upstream to improve genetic counseling for adolescents and young adults with the trait and the disease. Moreover, knowledge of personal disease status in the African American community is lacking so campaigns to improve education and testing are imperative.

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Idea No. 876