Hemophilia Treatment Centers (HTCs)
Hemophilia is a complex disorder. Good quality medical care from doctors and nurses who know a lot about the disorder can help prevent some serious problems. Often the best choice is a comprehensive hemophilia treatment center (HTC).
HTCs are specialized health care centers that bring together a team of doctors, nurses, and other health professionals experienced in treating people with hemophilia.1
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HTCs Improve Health
Hemophilia is an inherited blood disorder that can lead to chronic health problems such as joint disease over time. However, if the disorder is managed properly, people with hemophilia can live long, healthy lives.
A CDC study of 3,000 people with hemophilia showed that those who used an HTC were 40% less likely to die of a hemophilia-related complication compared to those who did not receive care at a treatment center.2 Similarly, people who used a treatment center were 40% less likely to be hospitalized for bleeding complications.3
The Comprehensive Care Model
Each HTC provides access to multidisciplinary health care professionals:
- Hematologists (doctors who specialize in blood)
- Orthopedists (doctors who specialize in bones, joints, and muscles)
- Physical therapists
- Social workers and other mental health professionals
- Other specialists available by referral, (e.g., dentist, nutritionist, genetic counselor)
Comprehensive hemophilia treatment centers emphasize prevention services to help reduce or eliminate complications. These services include using preventive medicine and connecting patients with community groups that provide education and support to families. For example, the National Hemophilia Foundation partners with HTCs and CDC to educate people with this disorder about the top five ways to reduce complications.
One of the major challenges facing researchers and scientists who work on rare disorders such as hemophilia is lack of access to uniform data. Federally funded HTCs throughout the United States can participate in CDC's Universal Data Collection (UDC) system, which collects a consistent set of data to monitor the health of people with hemophilia. The data are used to advance research for this condition and other related disorders.
- Baker JR, Crudder SO, Riske B, Bias V, Forsberg A. A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders. Am J Public Health 2005; 95:1910-1916.
- Soucie JM, Nuss R, Evatt, B, Abdelhak A, Cowan L, Hill H, Kolakoski M, Wilber N, and the Hemophilia Surveillance System Project Investigators. Mortality among males with hemophilia: relations with source of medical care. Blood 2000; 96:437-442.
- Soucie JM, Symons J, Evatt B, Brettler D, Huszti H, Linden J, and the Hemophilia Surveillance System Project Investigators. Home-based factor infusion therapy and hospitalization for bleeding complications among males with hemophilia. Haemophilia 2001; 7:198-206.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Blood Disorders
1600 Clifton Road
Atlanta, GA 30333
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