Reports from the ASH Research Collaborative SCD Data Hub

The ASH Research Collaborative (ASH RC) is a national resource to capture and share real-world experiences of people living with sickle cell disease (SCD). Using electronic health record (EHR) data collected between 2015 and 2024 across 17 U.S. pediatric and adult hospital centers, the SCD Data Hub has produced two complementary reports, each with a distinct purpose and audience:

• SCD Data Hub Report (June 2025) – Designed for clinicians and researchers, this report provides a comprehensive view of the Data Hub, including patient demographics, common comorbidities, medication prescribing patterns, laboratory testing, emergency department and inpatient utilization, and longitudinal follow-up.
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• Living with Sickle Cell Disease Report (September 2025) – Created with the community and for the community, this report was shaped with input from the ASH RC SCD National Community Advisory Board and highlights patient experiences such as emergency visits, hospital care, common SCD health problems, lab test trends, and treatment patterns, including prescriptions for medications like hydroxyurea.
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