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.

Accomplishments

• Released a Morbidity and Mortality Weekly Report and CDC Vital Signs on the need to prevent life-threatening complications from sickle cell anemia (SCA) in children. These publications highlighted data showing use of screening and treatments to prevent and reduce the severity of SCA complications is far too low. Also, published a supplemental editorial, “Prioritizing Sickle Cell Disease,” in the Journal of Pediatrics to reinforce the need to address barriers to care and health inequities faced by underserved racial and ethnic minority populations.
• Highlighted the diversity of people living with sickle cell disease (SCD) through the Stories of Sickle Cell project. Through a video series, short stories, and a photoblog, the Stories of Sickle Cell series provides a deeper understanding of people living with SCD to help destigmatize the disease and inspire action to support the sickle cell community.
• Provided up-to-date scientific information on inherited bleeding disorders:
  • Published a review article in the Journal of Women’s Health that provides an overview of the state of the science of bleeding disorders in women and describes CDC-funded activities, such as Community Counts and the Better You Know campaign. For a summary of the key points from the review article, click here.
  • Published findings from a Community Counts study that estimates the number of people with rare bleeding disorders, other than hemophilia and von Willebrand disease, receiving care at Hemophilia Treatment Centers in the United States.
• Improved CDC’s hemophilia treatment product inhibitor testing and surveillance by studying the stability of blood specimens used in CDC inhibitor assays under various conditions typically encountered during specimen shipping and storage. Knowledge of specimen stability will aid care providers in collection of specimens from patients with limited access to treatment facilities.
• Enhanced awareness of blood clot prevention via ongoing messages displayed every 5 minutes on the Times Square Nasdaq digital screen and billboard during Blood Clot Awareness Month in March. Roughly 360,000 pedestrian visitors daily were exposed to messages from the National Blood Clot Alliance’s signature Stop the Clot, Spread the Word® awareness campaign on general blood clot awareness, and on blood clot risks associated with pregnancy, cancer, and hospitalization. The campaign, developed in collaboration with CDC, has provided lifesaving information to hundreds of millions of people since 2015.
• Studied the impact of COVID-19 on blood disorders:
  • Published findings from a study of cerebral venous sinus thrombosis (CVST; rare life-threatening blood clots in the brain that had been reported in several people who had received one of the COVID-19 vaccines). This study provided clinicians and the wider public health community access to current and complete data on the epidemiology of CVST in the US population. These data were needed for informed decision-making. Among other findings, CVST was found to be higher in women vs. men and the risk increased with age. For a summary of the study, click here.
  • Published findings showing an increased rate of SCD-related death during the first year of the COVID-19 pandemic. These findings underscore the need for people with SCD to receive the COVID-19 vaccine. For a summary of the study, click here.
• Developed an online toolkit for healthcare providers caring for people with thalassemia. Resources include the CDC-funded virtual thalassemia grand rounds, other continuing medical education webinars, scientific articles, information on newborn screening, locations and contact information of specialty thalassemia treatment centers, and more.

Notable Scientific Publications

• Badawy SM, 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. Br J Haemotol. 2021;195(5):e160–e164.
• Miller CH. Monitoring of Von Willebrand Factor Inhibitors in Patients with Type 3 Von Willebrand Disease Using a Quantitative Assay. 2021;27(5):823–829.
• Miller CH, et al. Women and Girls with Hemophilia Receiving Care at Specialized Hemophilia Treatment Centers in the United States. 2021;27(6):1037–1044.
• Miller CH. The Clinical Genetics of Hemophilia B (Factor IX Deficiency). Appl Clin Genet. 2021;14:445–454.
• Payne AB, et al. Influenza Vaccination Rates and Hospitalizations Among Medicaid Enrollees with and Without Sickle Cell Disease, 2009-2015. Pediatr Blood Cancer. 2021;68(12):e29351.
• Raskob GE, et al. Cancer-associated Venous Thromboembolism: Incidence and Features in a Racially Diverse Population. J Thromb Haemost. 2022;20(10):2366–2378.
• Saber I, et al. Racial Differences in Venous Thromboembolism: A Surveillance Program in Durham County, North Carolina. Res Pract Thromb Haemost. 2022;6(5):e12769.
• Snyder AB, et al. Surveillance for Sickle Cell Disease — Sickle Cell Data Collection Program, Two States, 2004–2018. MMWR Surveill Summ. 2022;71(9):1–18.
• Soucie JM, et al. Prevalence of Comorbid Conditions Among Older Males with Haemophilia Receiving Care in Haemophilia Treatment Centers in the United States. 2022;28(6):986–995.
• Wendelboe A, et al. Exploring the Applicability of Using Natural Language Processing to Support Nationwide Venous Thromboembolism Surveillance: Model Evaluation Study. JMIR Bioinform Biotech. 2022;3(1):e36877.