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, cutting across boundaries of age, race, sex, and socioeconomic status. With proper action, some blood disorders can be prevented. In the case of 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 icon to launch a new arm of the Stop the Clot, Spread the Word® campaignexternal icon to continue to improve awareness of venous thromboembolism (VTE) in the United States. The new campaign materials garnered more than 500 million media impressions. These resources helped to educate patients and providers about blood clots, specifically cancer-associated VTE.
- Addressed and highlighted clinical best practices in the diagnosis, treatment, and prevention of VTE through CDC’s Public Health Webinar Series on Blood Disorders, which included Selection of a Risk Assessment Model for VTE Prevention in Hospitalized Medical Patients external iconand Update on COVID-19 and Thrombosis Risk. Each presentation had more than 500 registrants.
- Developed and launched two new components of the Community Counts Data Visualization Tool, an interactive platform that describes characteristics of more than 65,000 individuals with bleeding disorders.
- The “Treatments” tab allows users to explore information about treatment plans, types of treatment products used, age at first treatment, age when regular infusions of clotting factor concentrates were begun in order to prevent bleeding (called continuous prophylaxis), and use of treatment products that are made from plasma.
- The “Bleeding Disorders Burden” tab displays information about an individual’s experience living with a bleeding disorder, including location of care, emergency department and hospital visits, school and work absenteeism, long-term pain and its relationship to opioid use, and other medical conditions.
- Improved laboratory monitoring of inhibitors, a complication related to certain treatments for bleeding disorders, by evaluating the current CDC inhibitor testing and reporting procedures to determine the most accurate and efficient methods for testing given the changing treatment product landscape.
- Increased understanding of hemoglobinopathies (red blood cell disorders) through expanded health monitoring and characterization of these conditions, including the impact that COVID-19 is having on the health of people with sickle cell disease and thalassemia.
Looking to the Future
COVID-19 has directly or indirectly impacted those living with blood disorders. We will continue to monitor and assess the situation, directing possible resources to help reduce the impact to those affected. We will use Community Counts data to track emerging trends in hemophilia treatments and treatment-related complications. We will also expand the Sickle Cell Data Collection program and study long-term trends in diagnosis, treatment, and healthcare access for people with sickle cell disease in the United States. Finally, we are promoting awareness of the importance of blood donations for both sickle cell disease and thalassemia.
Notable Scientific Publications
- Abe K, et al. Higher rates of bleeding and use of treatment products among young boys compared to girls with von Willebrand diseaseexternal icon. Am J Hematol. 2020;95(1):10–17.
- Aluc A, et al. Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005–2016external icon. Pediatr Hematol Oncol. 2020;1–5.
- Badawy S, et al. Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitusexternal icon. Blood Adv. 2019;3(21):3297–3306.
- Bender M, et al. Newborn screening practices for alpha-thalassemia detection in the United States. MMWR Morb Mortal Wkly Rep. 2020;69(36):1269–1272.
- Gupta S, et al. Potential of the Community Counts Registry to characterize rare bleeding disorders.external icon 2019;25(6):1045–1050.
- Majumdar S, et al. Parvovirus B19 infection in sickle cell disease: An analysis from the CDC Hemoglobinopathy Blood Surveillance Projectexternal icon. Transfus Med. 2020;30(3):226–230.
- Panepinto J, et al. Coronavirus disease among persons with sickle cell disease, United States, March 20–May 21, 2020. Emerg Infect Dis. 2020;26(10):2473–2476.
- Payne A, et al. Evaluation of pre-analytic heat treatment protocol used in the CDC Nijmegen-Bethesda assay for heat inactivation of extended half-life hemophilia treatment productsexternal icon. 2020;26(1):e28–e30.
- Schieve L, et al. Evaluation of CDC’s hemophilia surveillance program: Universal Data Collection (1998–2011) and Community Counts (2011–2019).external icon MMWR Surveill Summ. 2020;69(5):1–18.
- Soucie J, et al. Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres. external icon 2020;26(3):487–493.