Protecting People and Preventing Complications of Blood Disorders

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Protecting the health of people with blood disorders

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is dedicated to reducing the public health burden resulting from blood disorders by contributing to a better understanding of blood disorders and their complications.

Blood disorders affect millions of people each year in the United States regardless of age, race, sex, and socioeconomic status. With proper action, some blood disorders can be prevented, and with inherited blood disorders, early intervention can prevent serious complications. At CDC, we are dedicated to helping people with blood disorders by

  • Contributing to a better understanding of blood disorders and their complications;
  • Working to develop, implement, and evaluate programs to prevent blood disorders and their complications;
  • Helping consumers and healthcare providers get the information they need; and
  • Encouraging action on behalf of individuals living with or affected by blood disorders.
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Accomplishments

    • Trained over 1,800 U.S. professionals with the curriculum, “Stop the Clot, What Every Provider Should Know,” in order to continue to improve awareness of venous thromboembolism.
  • Garnered more than 9,500 healthcare provider registrants for CDC’s Public Health Webinar Series on Blood Disorders. The webinars addressed and highlighted clinical best practices in the diagnosis, treatment, and prevention of blood disorders. Topics included COVID-19 and coagulopathy (a condition that affects the blood’s ability to form clots), thalassemia management, new guidelines on von Willebrand disease, hemophilia, and hereditary hemorrhagic telangiectasia.
  • Analyzed data and published three scientific articles to better characterize bleeding disorder occurrence rates, treatment, and complications using CDC’s surveillance data specific to von Willebrand disease.
    • Higher rates of bleeding and use of treatment products found among young boys compared to girls with von Willebrand disease. Read the full studyexternal icon in the American Journal of Hematology or the key findings for a summary of the study.
    • Occurrence rates of von Willebrand disease among people receiving care in specialized treatment centers in the United States. Read the full studyexternal icon in Haemophilia or the key findings for a summary of the study.
    • Characteristics, complications, and sites of bleeding among infants and toddlers less than 2 years of age with von Willebrand disease. Read the full studyexternal icon in Blood Advances or the key findings for a summary of the study.
  • Increased understanding of hemoglobinopathies (red blood cell disorders) by
  • Improved hemophilia treatment product inhibitor testing at CDC by studying how well the chromogenic Bethesda assay (a test to detect the presence of inhibitors) works in patients receiving a special treatment with Emicizumab (a medicine used in the management and treatment of hemophilia).

Looking to the Future

COVID-19 continues to directly or indirectly impact people with blood disorders, including venous thromboembolism. We will continue to assess the effects of COVID-19, directing resources to better understand and reduce the impact to those affected with blood disorders. We will use data to track emerging trends in hemophilia treatments and treatment-related complications. We will also study long-term trends in diagnosis, treatment, and healthcare access for people with sickle cell disease in the United States. In addition, we are continuing to promote awareness of thalassemia and the importance of blood donations for both sickle cell disease and thalassemia.

Notable Scientific Publications