Blood disorders - such as sickle cell disease, anemia, and hemophilia - affect millions of people each year in the United States, cutting across the boundaries of age, race, sex, and socioeconomic status. Men, women, and children of all backgrounds live with the complications associated with these conditions, many of which are painful and potentially life-threatening. With proper preventive actions and early intervention, many of these disorders and their complications could, to a large extent, be eliminated. The Centers for Disease Control and Prevention (CDC) is working toward developing a comprehensive public health agenda to promote and improve the health of people with blood disorders.
Understanding Blood Disorders
As a key component of this public health approach, CDC staff invest in identifying, monitoring, diagnosing, and investigating blood disorders so that we can understand the prevalence and effect of these disorders.
Monitoring Health Status to Identify Community Problems
How many people does the condition affect? How does it manifest itself within a population? Are certain groups at higher risk for the disorder or its complications? Charting the characteristics and outcomes of a disease population can provide insight into these questions, as well as help identify the quality and cost of care issues that people who are affected face. For sickle cell disease, CDC currently is working with a multidisciplinary steering committee to create an effective surveillance program to better understand how the condition affects communities, identify health risks, determine health service needs, and mobilize community assets. CDC monitors hemophilia patients for the development of inhibitors, or antibodies that make treatment difficult resulting in reduced quality of life. It is anticipated that an understanding of the causes of inhibitors might lead to decreased incidence of inhibitors, decreased health care costs, and safer and more effective treatment products for people with hemophilia.
Defining the Causes and Complications
Population-based studies can increase our understanding of risk factors that can result in severe complications for people with blood disorders. CDC is conducting studies to define and determine the causes and complications of bleeding and clotting disorders such as hemophilia and deep vein thrombosis. For example, CDC studies have documented that women with sickle cell trait are at higher risk of developing blood clots when using birth control pills. If we at CDC can increase our understanding of blood disorders it will allow us to collaborate more fully with state and local partners to develop more accurate and effective prevention, outreach, and treatment programs.
Creating a Collaborative Infrastructure
Core to CDC’s public health approach is integrating public health-related information systems, such as disease registries. By collaborating with health care providers, state health departments, and community-based organizations to track blood disorder characteristics and provide education for and outreach among certain populations, knowledge and insight can be gained to develop effective prevention programs.
- CDC works with several comprehensive care networks of hospital-based treatment centers that use multidisciplinary teams of health care specialists; conduct cutting-edge clinical research; and provide education and outreach to people with blood disorders such as hemophilia, thrombosis, thalassemia, and Diamond Blackfan anemia. For hemophilia, this approach has decreased mortality and hospital stays by as much as 40% among people treated at these centers.
- CDC has established the Universal Data Collection (UDC) system with hemophilia treatment centers to monitor people with hemophilia and other bleeding disorders for the presence of bloodborne infections. These types of data systems also can provide data for evaluating comprehensive patient care, ultimately leading to better health outcomes and services.
Translating Research into Action
The basis of public health is putting research results into action. Creating accessible health information to encourage the adoption of healthy behaviors results in better health outcomes. Believing strongly in the importance of health literacy, CDC has invested in educating communities about blood disorders through partnerships with community-based organizations. For example, CDC has partnered with the National Hemophilia Foundation to develop a hemophilia complication prevention campaign and with the Cooley’s Anemia Foundation in outreach efforts to identify patients with thalassemia.
Strengthening Laboratory Capacity
CDC’s research laboratories play a critical role in advancing knowledge of blood disorders. Increasing the capacity of CDC’s laboratories—both in terms of resources and efficiency—will enhance the ability to gain insights into what causes and affects conditions such as deep vein thrombosis and hemophilia. Investing in enhanced laboratory equipment and maximizing current resources will allow us to see how a person’s genetic makeup and environment can influence disease. With this knowledge, we can develop prevention programs to educate populations on risk factors, treatments, interventions, and maybe even cures. As laboratory capacity is strengthened, we advance the science of blood disorders by contributing to and utilizing nationwide laboratory databases. Sharing information will help identify disease patterns and clues that eventually could lead to improving health outcomes.
Improving the Lives of People with Blood Disorders
Blood disorders are a serious public health problem. CDC is uniquely positioned to reduce the public health burden resulting from these conditions by contributing to a better understanding of blood disorders and their complications; ensuring that prevention programs are developed, implemented, and evaluated; ensuring that information is accessible to consumers and health care providers; and encouraging action to improve the quality of life for people living with or affected by these conditions.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Blood Disorders
1600 Clifton Road
Atlanta, GA 30333
TTY: (888) 232-6348
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