This national overview is assembled and maintained through the 360 SCD Hub's data partnership with The Force for Health Network. Every figure carries a source — tap any i icon to see where it comes from and what it means.
🩸 360 SCD Hub
The Sickle Cell Foundation of Arizona's national hub for education, care navigation, and community data.
🛡️ The Force for Health® Network
Partner that curates the surveillance sources and contributes the sickle cell indicator to the PHIT Score.
📊 PHIT Data Systems
The data engine behind the dashboard. Figures are currently compiled from CDC SCDC, NewSTEPs & HRSA; the page is built to refresh from the live PHIT feed as it comes online.
State-Level SCD Surveillance Map
Click any state to see its sickle cell profile. States marked with a white dot are CDC SCDC-participating i states with active surveillance; other states use estimates modeled from newborn screening data.
SCDC is the CDC’s Sickle Cell Data Collection program. In SCDC states (marked with a white dot), the CDC links Medicaid, newborn-screening, hospital and clinical records to count and follow real people living with sickle cell disease — so those figures are true surveillance, not estimates. Sixteen states are funded today (up from just 2 in 2015); every other state shows a modeled estimate from newborn-screening and census data. Tap SCDC Participation below to light up the covered states.
Key Facts
National snapshot of sickle cell disease burden, screening, and access to care in the United States. Tap any i for the source.
Trends in SCD Care i
Progress indicators and persistent gaps across the SCD care continuum.
PHIT Score — Sickle Cell Sub-Indicator
The 360 SCD Hub contributes this sickle cell indicator to the Chronic Disease Burden category of the PHIT Score, developed with The Force for Health Network. The composite blends six metrics: prevalence, birth incidence, mortality, hydroxyurea access, newborn-screening follow-up quality, and ED utilization.
Blossom Where You Are Planted
See how the Sickle Cell Foundation of Arizona is helping to lead the way
From community zones and family health tracking to specialist care navigation, SCFA is turning national data into local action — explore the Sickle Cell in Arizona story.
Data Sources
- MMWR — Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability, SCDC Program, 11 States, 2016–2020
- CDC — About the Sickle Cell Data Collection (SCDC) Program
- CDC — Newborn Screening Data
- HRSA — Sickle Cell Anemia Newborn Screening
- ASH Blood 2025 — Burden and Trends of SCD in the US (GBD 2021)
- JAMA Network Open 2025 — Redefining High ED Utilization for SCD
- ENHANCE Study — NBS Follow-Up Variability for SCD
- Hassell KL — Population Estimates of SCD in the U.S. (AJPM 2010)
Note on modeled estimates: For states not currently participating in SCDC, state-level SCD population and incidence are modeled from national birth prevalence per 10K non-Hispanic Black live births, applied to each state's Black/African-American population share, with an early-mortality adjustment per Hassell 2010. These figures are labeled “NBS-modeled” and should be read as directional, not surveillance-grade.