Sickle Cell Disease Monitoring

"CDC is working to improve the lives of people with sickle cell disease (SCD), an inherited blood disorder. Learn about CDC’s SCD monitoring projects, and find a suite of online resources that can help you or someone you know live healthy with 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.

CDC Monitoring Projects

CDC, and participating states, began SCD surveillance (monitoring) in 2010 to learn more about people with SCD and the health problems they experience. SCD monitoring involves collecting information on diagnoses, treatments, and healthcare access for people with SCD in the United States.

CDC coordinated these efforts as part of three projects:

• Registry and Surveillance System for Hemoglobinopathies (RuSH) (from 2010-2012)
• Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) (from 2012-2014)
• Sickle Cell Data Collection (SCDC) program (ongoing since 2015)

The SCDC program, which has been ongoing since 2015, is CDC’s current monitoring project. The SCDC program collects health information about people with SCD to study the long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. Currently, Georgia and California are the states participating in the SCDC program. As more resources become available, CDC plans to expand the program to include additional states. The program will help inform policy and healthcare standards to improve and extend the lives of people with SCD..."
Sickle cell disease