Sickle Cell Disease Research Network

Facilitating Sickle Cell Disease Research to Improve Clinical Outcomes

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Reports from the ASH Research Collaborative Sickle Cell Disease Data Hub Program

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 data collected between 2015 and 2025 across 20 United States pediatric and adult hospital centers, the SCD Data Hub Program has produced two complementary reports, each with a distinct purpose and audience:

Living with Sickle Cell Disease Report

Created with and for the community, this report was shaped with input from members of the SCD National Community Advisory Board and clinicians from participating Data Hub sites. The report uses real-world data collected in the SCD Data Hub to help people understand the range of experiences of those impacted by the disease.​

2026 Report (Living with Sickle Cell Disease)
Explore the Sickle Cell Disease Data Hub Reports: Insights from the last 9 years

Sickle Cell Disease Data Hub Report

Designed for health care professionals 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.​

  • 2026 Report: Coming Soon
    2025 Report: Download

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