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Updated: Jun 12, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together
Background:
The Centers for Disease Control and Prevention's Sickle Cell Data Collection (SCDC) program comprises multidisciplinary teams, which include community-based organizations. Partnering with community-based organizations (CBOs) is a novel approach to ensure that SCDC data are actionable.
Objective:
To better understand areas for mutual capacity building, we explored the relationships and dynamics between CBO and data teams within the SCDC program in 10 states.
Methods:
We conducted semi-structured interviews with CBO (n = 13) and SCDC (n = 10) participants and then categorized and compared text from each interview and across states. Six themes emerged.
Lessons Learned:
Transparency and trust are essential. Early CBO engagement and leadership are needed for trust and agreed upon priorities.
Conclusions:
Participants contextualized trust, the most prominent theme, within discussions of racism and health inequities. Relationships between the CBO and data teams bring hard data and human experience together for advocacy, education, improved care, and a platform for the SCD voice.
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