About CDC’s Work on Sickle Cell Disease

Mother and Daughter posing for picture

A Public Health Priority

Sickle cell disease (SCD) is a common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. SCD can lead to lifelong disabilities and reduce average life expectancy. In addition, the financial cost of SCD is high, both to people with the disease and to the health care system. Costs for hospital stays due to complications of SCD were estimated at $488 million in 2004.1

The Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders considers SCD a major public health concern and is committed to conducting surveillance, raising awareness, and promoting health education.

Determining How Many People Have SCD

Currently, there are no data systems in the United States to determine the number of people who have SCD and other hemoglobinopathies (disorders affecting red blood cells), nor to fully describe how these conditions affect an individual’s health. The Centers for Disease Control and Prevention (CDC) wrapped up several projects: the Registry and Surveillance System for Hemoglobinopathies (RuSH), the Thalassemia Data Collection Project, Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH), and Blood Safety Surveillance among People with Blood Disorders. Current efforts that focus on SCD and thalassemia involve two new projects: the Sickle Cell Data Collection (SCDC) program and a Transfusion Complications Monitoring project.

To learn more about surveillance activities for SCD, please visit our Sickle Cell Disease Research page.

Educating People About SCD

CDC strives to educate people about SCD by providing free materials to families affected by the disease. These materials discuss how to live well with SCD, how to prevent infections, and when to see a doctor. In addition, CDC is working to raise awareness of SCD among the general public. This effort will be particularly helpful to groups such as teachers and other nonmedical professionals who care for or work with people with SCD.

To view, print, or download materials, please visit our Free Materials page.


  1. Agency for Healthcare Research and Quality. Healthcare Cost and Utilization Project. Statistical Brief #21: Sickle Cell Disease Patients in U.S. Hospitals, 2004. http://www.hcup-us.ahrq.gov/reports/statbriefs/sb21.pdf. Accessed December 2, 2009.