Protecting People and Preventing Complications of 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.
- Partnered with the National Blood Clot Allianceexternal iconto launch a public service announcement campaign that aired more than 22,000 times and garnered 134 million media impressions.
- 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
- Expanding CDC’s Sickle Cell Disease Data Collection program from 2 to 11 states,
- Developing the first fact sheet of the educational series “Steps to Better Health for People with Sickle Cell Disease,”
- Launching a CDC accredited Virtual Thalassemia Grand Rounds seminar, and
- Issuing recommendations on transfusion management of beta-thalassemia to address concerns for people with sickle cell disease and thalassemia.
- 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
- Badawy S, Payne A, Hulihan M, et al. Concordance with comprehensive iron assessment, hepatitis A vaccination, and hepatitis B vaccination recommendations among patients with sickle cell disease and thalassaemia receiving chronic transfusions: an analysis from the Centers for Disease Control haemoglobinopathy blood safety project.external icon Br J Haematol. 2021;195(5):e160-e164.
- Boylan B, Niemeyer G, Werner B, et al. Evaluation of anti-factor VIII antibody levels in patients with haemophilia A receiving immune tolerance induction therapy or bypassing agents.external icon Haemophilia. 2021;27(1):e40–e50.
- Dupervil B, Abe K, O’Brien S, et al. Characteristics, complications, and sites of bleeding among infants and toddlers less than 2 years of age with external icon Blood Adv. 2021;5(8):2079-2086.
- Miller C. Monitoring of von Willebrand factor inhibitors in patients with type 3 von Willebrand disease using a quantitative assay.external icon Haemophilia. 2021;27(5):823–829.
- Miller C and Boylan B. The chromogenic Bethesda assay and the Nijmegen-Bethesda assay for factor VIII inhibitors in hemophilia A patients: Are they equivalent?external icon J Thromb Haemost. 2021;19(7):1835-1837.
- Miller C, Boylan B, Payne A, et al. Validation of the chromogenic Bethesda assay for factor VIII inhibitors in hemophilia A patients receiving Emicizumab.external icon Int J Lab Hematol. 2021;43(2):e84–e86.
- Panepinto J, Brandow A, Mucalo L, et al. Coronavirus disease among persons with sickle cell disease, United States, March 20-May 21, 2020.external icon Emerg Infect Dis. 2020;26(10):2473-2476.
- Payne A, Adamkiewicz T, Grosse S, et al. Influenza vaccination rates and hospitalizations among Medicaid enrollees with and without sickle cell disease, 2009-2015.external icon Pediatr Blood Cancer. 2021;68(12):e29351.
- Soucie J, Miller C, Byams V, et al. Occurrence rates of von Willebrand disease among people receiving care in specialized treatment centers in the United States.external icon Haemophilia. 2021;27(3):445-453.
- Wendelboe A, Campbell J, Ding K, et al. Incidence of venous thromboembolism in a racially diverse population of Oklahoma County, Oklahoma.external icon Thromb Haemost. 2021;121(6):816-825.