Observational Dietary Intake and Dietary Behaviors among Adults Living with Sickle Cell Disease

Clinical Center

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Abstract

In December, 2021 the protocol was approved by the NIH Intramural Review Board (IRB). Recruitment for the study commenced in May, 2022. Study procedures completed to date include the enrollment and informed consent of 17 participants and completion of all study procedures by 10 participants as of August 2022. Study participants were recruited from NIH Intramural studies, the Office of Patient Recruitment, as well as from non-NIH hematology providers. Two data manuscripts related to the study's research objectives have been prepared for submission to peer-reviewed journals. The study plans to continue recruitment until December, 2026. Dissemination of both quantitative and qualitative empiric data is planned to commence in 2026. Resources used to date for the study include electronic consent processes, outpatient clinic staff at the NIH Clinical Center, the approved NIH CC telehealth clinical visit platform, trans-NIH Core facilities for metabolomics data results, the NIH CC TBHP laboratory is used for blood processing and to address translational research questions, and the utilization of BTRIS and REDCap services for data management.