CDC awards funds to learn more about people with sickle cell disease

Money will help prepare states to collect sickle cell disease data

Press Release

For Immediate Release: September 25, 2019, 1:00 p.m. ET
Contact: Media Relations
(404) 639-3286

The Centers for Disease Control and Prevention announced nearly $1.2 million in new funding to help states develop systems to collect data on the issues faced by people living with sickle cell disease.

Currently, only two states – California and Georgia – work with CDC on the Sickle Cell Data Collection program to collect population-based, comprehensive health information about people with sickle cell disease. This funding brings to nine the total number of states in the Sickle Cell Data Collection program.

By building capacity for additional states to collect data on sickle cell disease, this new one-year cooperative agreement builds the framework and a road map for recipients to gather unique data and conduct in-depth analyses to better understand the needs and improve the health of this vulnerable population.

“HHS is committed to normalizing the lives of people living with sickle cell within 10 years,” said Adm. Brett Giroir, M.D., Assistant Secretary for Health, Department of Health and Human Services. “Expanding the Sickle Cell Data Collection program is a critical first step toward reaching this goal.”

New Funding will improve and expand sickle cell data collection efforts

The new funding awardees and the states they will cover are

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

These sites will spend the next year developing and implementing strategies to collect vital information about sickle cell disease.

“Data is vital to informing new treatments and clinical care that will improve the lives of people affected by sickle cell disease,” said CDC Director Robert R. Redfield, M.D. “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.”

In 2018, President Trump signed the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, which provides for a national surveillance and prevention program. It authorizes the award of grants for three broad purposes: Collecting and maintaining data on sickle cell disease health outcomes and carrying out various public health activities that include education and training of health professionals at the community, local, and state levels; supporting local and state laboratories that conduct tests to detect sickle cell disease; and evaluating best practices for the prevention and treatment of complications from sickle cell disease.

Sickle cell disease is an inherited red blood cell disorder. Healthy red blood cells are round, which helps them move easily through the body’s blood vessels. With sickle cell disease, these cells are crescent moon-shaped, like a farmer’s sickle, and can get stuck, especially in small blood vessels. This keeps blood from flowing properly, which can damage the body’s organs and cause severe pain. While the expanded Sickle Cell Data Collection program will provide better estimates of the prevalence of sickle cell disease, it has been previously estimated that about 100,000 Americans have this disease. It is most common among people of African descent.


CDC works 24/7 protecting America’s health, safety and security. Whether disease start at home or abroad, are curable or preventable, chronic or acute, or from human activity or deliberate attack, CDC responds to America’s most pressing health threats. CDC is headquartered in Atlanta and has experts located throughout the United States and the world.

Page last reviewed: September 25, 2019