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Test Your Knowledge: Sickle Cell Disease

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a "sickle." The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome (clogged blood vessels in the lungs), and stroke (clogged blood vessels in the brain). CDC’s National Center on Birth Defects and Developmental Disabilities has been actively raising awareness of SCD across the country, including sharing new resources, research, and treatment advances to improve the lives of people with SCD.

Learn About CDC’s Work in SCD

There is still much to learn about SCD and how to prevent and manage health problems that can come from having the disease. CDC is working hard to fill these knowledge gaps.  Highlighted below is a sampling of CDC’s work in this area.

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 raising 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.

Helping People Find SCD Services & Resources

The Division of Blood Disorders in CDC's National Center on Birth Defects and Developmental Disabilities has developed new resources to share with our partners and the sickle cell community, including an updated resource directory and interactive map.  These helpful resources include a listing of national agencies, specialty care centers, and community-based organizations that provide services and resources for people affected by SCD.

Registry and Surveillance System for Hemoglobinopathies (RuSH)

What is it like to live with SCD?

Watch this video to find out

In 2010, in partnership with the National Institutes of Health's National Heart, Lung, and Blood Institute, the Registry and Surveillance System for Hemoglobinopathies (RuSH) project was launched to collect initial state-specific information on people with hemoglobinopathies.  Hemoglobinopathies is the medical term for a group of blood disorders and diseases that affect red blood cells. These disorders include both SCD and thalassemia. The RuSH project activities in the seven participating states (California, Florida, Georgia, Michigan, New York, North Carolina, and Pennsylvania) are scheduled to end in the fall of 2013. Currently, RuSH states and CDC are analyzing the data that were collected, and preparing to launch activities for health promotion and prevention of health problems by:

  • Creating fact sheets describing project results
  • Developing scientific articles to describe the project, including how it was done and what information was collected
  • Developing scientific articles that describe what was learned about the health of youth and adults with SCD and thalassemia in the 7 states

Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH)

To expand and learn more about the information collected during RuSH, CDC has started a new hemoglobinopathies project. PHRESH focuses on two areas: surveillance (monitoring), and health promotion and prevention of health problems. The project has launched in California, Mississippi, and Georgia, and will address several objectives of the "Healthy People 2020 (HP2020), Blood Disorders and Blood Safety" initiative, including:

  • Increasing the number of people with hemoglobinopathies who receive:
    • recommended vaccinations (shots)
    • early and continuous screening for health problems related to their condition
    • appropriate treatment

The information gained from PHRESH will serve as a model for national and international agencies to address the developing needs of people living with hemoglobinopathies.

As a result of PHRESH, we will have:

  • Learned roughly the number of people living with hemoglobinopathies in the 3 participating states and better understand their use of health services;
  • Increased access to health education materials for people living with hemoglobinopathies, their families, and health care providers;
  • Increased awareness about ways to reduce health problems due to hemoglobinopathies;
  • Increased use of methods to prevent health problems due to hemoglobinopathies;
  • Improved the ability of laboratories to test and identify people with hemoglobinopathies;
  • Developed hemoglobinopathy monitoring processes, including the methods for collecting information that will make it easier to conduct this project on a larger scale in the future.

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