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.
Data for Action
Community Counts is a public health monitoring (surveillance) program designed to gather and share information about common health issues, medical complications, and causes of death that affect people with bleeding disorders cared for at U.S. hemophilia treatment centers (HTCs). Data collection began in 2012, but the bleeding disorder community expressed a need for real-time access to the data beyond standard surveillance reports. In 2019, the Division of Blood Disorders developed and launched the Community Counts Data Visualization Tool. The tool displays de-identified data—information in which all personally identifiable characteristics have been removed to protect identities and privacy—on patients with bleeding disorders in a new, interactive, visual format for clinicians, patients, policymakers, and the public to learn more about the burden of bleeding disorders in the United States. The tool includes the following:
- Data on more than 62,000 patients with bleeding disorders receiving care at approximately 140 federally funded HTCs participating in Community Counts;
- Information on more than 10 different patient characteristics (such as age, sex, race, and insurance status) and clinical characteristics (such as viral and vaccination status) that can be accessed by bleeding disorder diagnosis and severity; and
- The largest and most representative sample of patients with hemophilia (more than 25,000 shown in the Data Visualization Tool) in the United States
The hemophilia treatment landscape is rapidly changing. Past CDC surveillance has shown that starting young children with severe hemophilia on preventive treatment with clotting factor products (also called prophylaxis) before age 4 years is the most effective way to preserve healthy joint function over the lifespan. New, longer-acting treatment products for patients with bleeding disorders are on the market. The data from CDC’s Community Counts surveillance system will make it possible to track emerging trends in hemophilia treatments, the use of various treatment types across the lifespan, and associated impacts on long-term prevention of hemophilia complications, such as joint disease. We are also working to expand the Sickle Cell Data Collection (SCDC) program, which collects health data about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The SCDC program will expand to other states and the data will be used to further delineate healthcare issues and barriers for those living with SCD.
Notable Scientific Publications
- Abe K, Kuklina EV, Hooper WC, Callaghan WM. Venous thromboembolism as a cause of severe maternal morbidity and mortality in the United Statesexternal icon. Semin Perinatol. 2019;43(4):200–204.
- Badawy SM, Payne AB, Rodeghier MJ, Liem RI. Exercise capacity and clinical outcomes in adults followed in the Cooperative Study of Sickle Cell Disease (CSSCD)external icon. Eur J Haematol. 2018;101(4):532–541.
- Gupta S, Acharya S, Roberson C, Lail A, Soucie JM, Shapiro A. Potential of the Community Counts Registry to characterize rare bleeding disordersexternal icon. Haemophilia. 2019;25(6):1045-1050.
- Mainous AG 3rd, Carek PJ, Lynch K, Tanner RJ, Hulihan MM, Baskin J, Coates TD. Effectiveness of clinical decision support based intervention in the improvement of care for adult sickle cell disease patients in primary careexternal icon. J Am Board Fam Med. 2018;31(5):812–816.
- Okolo AI, Soucie JM, Grosse SD, Roberson C, Janson IA, Allen M, Shapiro AD. Population-based surveillance of haemophilia and patient outcomes in Indiana using multiple data sourcesexternal icon. Haemophilia. 2019;25:456–462.
- Ortel TL, Arnold K, Beckman M, Brown A, Reyes N, Saber I, Schulteis R, Singh BP, Sitlinger A, Thames EH. Design and implementation of a comprehensive surveillance system for venous thromboembolism in a defined region using electronic and manual approachesexternal icon. Appl Clin Inform. 2019;10(3):552–562.
- Payne AB, Miller CH, Ellingsen D, Driggers J, Boylan B, Bean CJ. Reagent substitution in the chromogenic Bethesda assay for factor VIII inhibitorsexternal icon. Haemophilia. 2019;25:e342–e344.
- Pipe SW, Sabatino DE, Nugent DJ, Hooper WC, Soucie JM, Hoots WK, DiMichele DM. Executive Summary of the NHLBI State of the Science (SOS) Workshop: Overview and next steps in generating a national blueprint for future research on factor VIII inhibitorsexternal icon. Haemophilia. 2019;25(4):610–615.
- Radke T, Paulukonis S, Hulihan MM, Feuchtbaum L. Providers’ perspectives on treating patients with thalassemiaexternal icon. J Pediatr Hematol Oncol. 2019;41:e421–e426.
- Tanabe P, Spratling R, Smith D, Grissom P, Hulihan M. CE: Understanding the complications of sickle cell diseaseexternal icon. Am J Nurs. 2019;119(6):26–35.