Prevention of the Complications of Bleeding Disorder Through HTCs

DESCRIPTION (provided by applicant): The purpose of this program is to prevent complications of hemophilia and other bleeding disorders through assessment, surveillance, outreach, education, consultation, and management. A regional network of ten hemophilia treatment centers in Kentucky, North Carolina, South Carolina, and Tennessee will be coordinated by the University of North Carolina at Chapel Hill and provide comprehensive care and prevention services to persons with hemophilia and other bleeding disorders. In 2005, Region IV-North (comprising nine hemophilia treatment centers [HTCs] in North Carolina, South Carolina, Kentucky, and Tennessee) had a total of 1,848 active patients with hemophilia and other bleeding disorders. Hemophilia patients constitute 61.5% of the total patients, while 27.6% have von Willebrand disease and 10.9% have other bleeding disorders. In 2005, there were 380 active female patients, an increase of 25.2% over the 2004 total. Almost 22% of the active patients are from ethnic minority groups, with an explosive increase in Hispanics. In comparison to U.S. averages, there are higher poverty rates and lower educational levels within the region, predisposing individuals to suboptimal behaviors in relation to diet, exercise, and use of health care services. The network will collaborate with regional lay organizations and the four non-federally funded centers in the region to deliver appropriately tailored prevention messages aimed at reducing complications of bleeding disorders and improving health across the lifespan, with the intention of attaining and measuring specific outcomes to reduce complications. Further, the region will redouble its outreach to underserved populations, such as women and minorities, to integrate them into the HTC system. All of these efforts will be systematically evaluated to assess their efficacy. Surveillance of patients enrolled in the CDC's Universal Data Collection (UDC) project, which has collected samples and data from over 18,000 individuals nationally since 1998, will continue in order to monitor the safety of the blood supply. The network will also expand upon the UDC program to collect data that could be used for clinical research projects leading to improved health outcomes for individuals with bleeding disorders, accelerated adoption of healthy behaviors, the reduction or elimination of health disparities among various ethnic and racial groups and between genders, and the achievement of greater efficiency in the core public health infrastructure.