Colorado Sickle Cell Data Collection Program: Surveillance and Prevalence of Sickle Cell Disease in Colorado (Preprint)

BACKGROUND Sickle cell disease (SCD) is a hereditary blood disorder causing significant health complications. While advancements in care have improved survival rates, accurate prevalence data in Colorado has been limited, hampering effective public health interventions. OBJECTIVE The objectives of this study were to establish and describe the Colorado Sickle Cell Data Collection (CO-SCDC) program, update the prevalence and birth prevalence of sickle cell disease (SCD) in Colorado, and improve surveillance methodologies to inform public health interventions, education initiatives, and policy development. METHODS The CO-SCDC program collected and linked data from multiple sources including the Colorado Department of Health and Environment and electronic health records from University of Colorado Health and Children’s Hospital Colorado. Data from 2012 to 2020 were analyzed using national case definitions to classify SCD cases. Case validation was performed via clinical review by two hematologists. Prevalence and birth prevalence of SCD in Colorado were calculated as were demographics of the Colorado SCD population. RESULTS In 2019, 435 individuals were identified as living with SCD in Colorado, an increase of 16-40% over previous estimates. The prevalence of SCD was highest in urban counties, with concentrations in Arapahoe, Denver, and El Paso counties. Birth prevalence of SCD increased from 11.9 per 100,000 live births between 2010-2014 to 20.1 per 100,000 live births between 2015-2019. The study highlighted a 67% increase in SCD births over the decade, correlating with the growth of the Black or African American population in the state. CONCLUSIONS The CO-SCDC program successfully established a capacity to perform SCD surveillance and a baseline of prevalence estimates for SCD in Colorado. The findings underscore the importance of surveillance for informed public health strategies and policy development to improve outcomes for individuals with SCD.