CDC supports a network of specialized health-care centers to prevent and reduce complications experienced by persons with certain hereditary blood disorders. These centers provide comprehensive health management and prevention services to persons with bleeding disorders, thrombophilia (clotting disorders), and thalassemia. The centers use multi-disciplinary teams of health-care specialists, state-of-the art clinical research programs, and outreach and education programs.
Currently, the network consists of approximately 140 hemophilia treatment centers (HTCs), eight hemostasis and thrombosis centers, and six thalassemia care centers. CDC is working to increase the number of hemostasis and thrombosis centers as well as thalassemia centers.

• Locate an HTC

• Locate a hemostasis and thrombosis center

• Locate a thalassemia care center

Model of care

Blood disorders, such as those listed above, are complex conditions that can lead to chronic health problems. Optimal care to prevent the complications of these disorders requires a team of health professionals from several different disciplines. For example, the professionals who provide comprehensive care in HTCs include

• adult and pediatric hematologists

• nurse coordinators

• social workers and other mental health professionals

• dentists

• orthopedists

• gynecologists

• physical therapists

• coagulation laboratory personnel

The teams work closely with local health-care providers to meet the specific needs of the affected persons to improve their quality of life.

Studies conducted by CDC indicate that integrating services in this way proves to be effective and efficient. The care provided in HTCs has been shown to significantly improve prevention of complications for persons with hemophilia. Mortality rates are 40 percent lower in persons who use HTCs than in those who do not, despite the fact that the more severely affected patients are the ones who typically visit these centers. HTCs place a premium on preventive medicine because of the difficulty and expense of treating the complications of hemophilia.

For the network of thalassemia centers, a modified model is being developed. Because of the locations and relatively small number of thalassemia patients in the United States, six "centers of excellence" are expected to share their support and services with clinics that serve patients locally.

For more information

Publications:

Soucie JM, Symons J 4th, 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 haemophilia. Haemophilia 2001;7(2):198-206.

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.

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This page was last updated August 05, 2004

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The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living.  Our work includes identifying the causes of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.