Sickle Cell Data Collection (SCDC) Program

Sickle cell disease (SCD)

Sickle cell disease (SCD) is a blood disorder present at birth. People with SCD have sickle-shaped red blood cells that stick together and block blood and oxygen from reaching all parts of the body, leading to health problems such as pain, anemia, infections, and stroke. Approximately 100,000 Americans are affected by SCD. CDC is committed to studying SCD to improve the health and care of people with this condition.

The Sickle Cell Data Collection (SCDC) program

The SCDC program collects health information about people with SCD to assess the long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program, which has been ongoing since 2015, currently works with teams in the 16 shaded states on the map below to collect and link data from several sources.

As more resources become available, CDC plans to expand the program to include additional states. The program helps inform policy decisions and resource allocation within states to improve and extend the lives of people with SCD.

Learn more about the SCDC program:

• SCDC Program
• SCDC Surveillance Summary
• SCDC Program Data
• SCDC Publications
• The Bloodline newsletter is a quarterly e-newsletter providing updates about the SCDC Program. Visit the webpage to subscribe.

Other online SCD resources

For people living with SCD and their caregivers

• The Steps to Better Health Toolkit was created by CDC in partnership with the American Society of Hematology (ASH). The toolkit includes information about common complications of SCD and steps to take for better health.
• Stories of Sickle Cell is a video series, collection of short stories, and photoblog that aims to highlight the unique stories and diverse identities of those living with SCD.
• Stepping Up is a two-part video series for teenagers and young adults with SCD. The videos share the stories of two young adults with SCD, Kevin and Calvanay, and their transition to adult care. They discuss how transitioning has affected them, and how they've overcome challenges.
• The Sickle Cell Trait Toolkit is a collection of fact sheets covering various health problems affecting people with sickle cell trait (SCT). People who have SCT inherit one sickle cell gene and one normal gene.

For healthcare providers

• "Understanding the Complications of Sickle Cell Disease," published in the American Journal of Nursing, provides an overview of major SCD-related health complications, as well as the nursing implications for each. CE credits are available.
• Provider Training Video Series: "Reducing Complications of Therapeutic Blood Transfusions in Sickle Cell Disease" is a four-part educational video series for healthcare providers. Created in collaboration with CDC and the Georgia Health Policy Center, this training series is designed to provide information about and strategies for reducing transfusion complications in people with SCD.
• Tools and information about SCD, including free educational materials to give to patients.

What you can do

Help spread the word! We encourage you to share our resources with friends, family, and colleagues to help people with SCD live healthy. Follow @CDC_NCBDDD on X (formerly Twitter) for future updates and to learn about new resources on SCD and other blood disorders. For more information about SCD, visit CDC's SCD website.