CDC Expands SCD Data Collection Program to 7 More US States in Effort to Improve Services

The Centers for Disease Control and Prevention (CDC) will share an award total of nearly $1.2 million with institutions in seven U.S. states, allowing them to take part in a data gathering program on sickle cell disease and how it affects daily life.

The funding brings to nine the number of states in the CDC’s Sickle Cell Data Collection program. The new states join Georgia and California as CDC partners in efforts to gain population-based, comprehensive health information. The program is aimed at better understanding the needs of sickle cell disease (SCD) patients, and in developing therapies more suited to their needs and providing greater support.

“HHS is committed to normalizing the lives of people living with sickle cell within 10 years,” Brett Giroir, MD, assistant secretary for health at the Department of Health and Human Services, which includes the CDC, said in a news release. “Expanding the Sickle Cell Data Collection program is a critical first step toward reaching this goal.”

The program aims to pinpoint patient communities, provide a better understanding of the transition from pediatric to adult care, gain more insight into Hispanic and older patients, and show how often patients use healthcare services. It will collect data from various sources, including newborn screening records, administrative datasets, death records and medical charts.

Institutions now part of this program, and the state each covers, are:

• Georgia State University Foundation (Georgia)
• Public Health Institute (California)
• Duke University (North Carolina)
• Indiana Hemophilia and Thrombosis Center (Indiana)
• Minnesota Department of Health (Minnesota)
• Michigan Department of Health and Human Services (Michigan)
• Virginia Department of Health (Virginia)
• University of Tennessee Health Science Center (Tennessee)
• University of Alabama at Birmingham (Alabama)

Over the coming year, the seven new institutions will develop and put in place methods of collecting key information about SCD, using the award money to help with preparation.

“Data is vital to informing new treatments and clinical care that will improve the lives of people affected by sickle cell disease,” said Robert R. Redfield, MD, CDC director. “This new funding expands CDC’s partner network across the country, which will accelerate efforts to ensure sickle cell patients live longer and healthier lives.”

The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, signed into law last year, provides for a national surveillance and prevention effort. It authorizes awards aimed at gathering and storing information on SCD health outcomes, and setting in motion public health activities that include educating and training healthcare professionals at community and other levels.

It also provides support to labs that test for SCD, and for the prevention and treatment of sickle cell disease complications.

Sickle cell, an inherited disease, affects red blood cells due to mutations in the hemoglobin gene. The hemoglobin protein this gene works to produce transports oxygen throughout the body. Its altered form is known as hemoglobin S, or sickle hemoglobin, because it causes normally oval-shaped red blood cells to assume a sickle shape and to stick together, blocking blood vessels. Disease symptoms range from mild to severe, and include anemia, pain, vision problems, swelling, and slow growth.

According to the American Society of Hematology, between 70,000 and 100,000 U.S. residents have sickle cell disease.