Georgia’s SCD surveillance program gets fresh support from CDC

Effort now represents about a third of U.S. sickle cell population

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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The Georgia State University Research Foundation has received a grant from the Centers for Disease Control and Prevention (CDC) to support the ongoing Sickle Cell Data Collection (SCDC) program in that state.

Established by the CDC in 2015, the program seeks to assess the frequency of sickle cell disease (SCD) in a particular state, and understand how it impacts patients’ health and how researchers and physicians can improve SCD care. Georgia and California were the first two states to participate. The program was expanded to nine states in 2019 and now covers 11 states. It’s estimated to represent about a third of the country’s SCD population.

“Unfortunately, Georgia is home to one of the largest sickle cell disease populations in the country, which is why it’s so important that we act quickly to save lives and prevent further pain,” Rep. Earl L. “Buddy” Carter, who aided in the program’s approval in Georgia, said in a press release. “This grant will help the state of Georgia understand the full scope of SCD and work toward a cure, and I am thrilled that Georgia State will be a leader in this important national program.”

Angie Snyder, PhD, the director of health policy and planning at Georgia State University’s Andrew Young School of Policy Studies, said the grant “will allow Georgia State University to expand our sickle cell data collection program to newer years of data and additional data sources and improve our ability to share data with Georgia’s robust network of partners to positively impact the lives of those living sickle cell disease, their families and communities.”

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SCDC program’s role in sickle care care

People with SCD produce a faulty version of hemoglobin, the protein that carries oxygen throughout the body, causing red blood cells to form a sickle-like shape. These cells don’t move properly through blood vessels, resulting in blockages that can obstruct blood flow and lead to other disease symptoms.

It’s estimated that SCD affects more than 100,000 people in the U.S., but the correct number is unclear.

The SCDC program’s primary goal is to improve the quality of life, life expectancy, and health of those living with SCD. This requires a combined effort from healthcare providers and administrators, pharmaceutical companies, SCD community organizations, policymakers, and public health organizations, along with patients and their advocates.

The program can be used to better understand where people with SCD live and where healthcare providers and resources are located so people receive the best services. This includes how often they utilize them and the factors that contribute to that use.

To do that, the program works with teams in several states, collecting data from newborn screening and population and healthcare utilization data.

The information that’s obtained can help understand why SCD patients often have more severe symptoms and use more healthcare services when they switch from pediatric to adult care.

It can also contribute to shedding light on the challenges of diagnosing SCD in specific populations, particularly Hispanics, including those born outside the U.S. People with SCD live longer now, making understanding the health problems they experience as they age more important.

Previous findings from the SCDC program in Georgia and California highlighted a need for more SCD specialty clinics. The surveillance data that was obtained has helped open new SCD clinics in underserved areas, educate healthcare providers, develop state healthcare policies, and guide new research initiatives.