Researchers reported that data collection for sickle cell disease (SCD) in the United States is useful for drafting healthcare policy and initiating new research, according to a study published in the Morbidity and Mortality Weekly Report.

The US Centers for Disease Control and Prevention (CDC) established the Sickle Cell Data Collection (SCDC) program in 2015 to characterize the epidemiology of the disease in California and Georgia. Since then, other SCD collection programs—such as the Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) and the Registry and Surveillance System for Hemoglobinopathies (RuSH)— have expanded existing data collection for cases of SCD in the United States. 

Researchers have compiled the data from these studies to form a more comprehensive overview of the state of the disease in the United States. The results demonstrated that SCD was the most common hemoglobinopathy (26% to 28%), followed by HbS/β+-thalassemia (7% to 8%) and other compound heterozygous forms of SCD (1% to 3%). Both male and female patients were equally represented in cases that were confirmed. 

In addition, data acquired suggest that hydroxyurea is used less often by patients with SCD who experience severe complications. This highlights “the need to address concerns about safety, adherence, and access to care, among other barriers,” the authors of the study wrote. 

Read more about SCD etiology 

“The data from Georgia and California provide important information on health care and outcomes of persons with SCD in each state,” the authors wrote. “The challenges that patients face in one state might not be the same in other states and, consequently, recommendations for interventions to improve health outcomes also might be different.” 

This suggests that increasing SCD surveillance by collaborating with other SCD surveillance programs that have the participation of both patients and their physicians can strengthen policy-making nationally and at a local level. 


Snyder AB, Lakshmanan S, Hulihan MM, et al. Surveillance for sickle cell disease – sickle cell data collection program, two states, 2004-2018MMWR Surveill Summ. 2022;71(9):1-18. doi:10.15585/mmwr.ss7109a1