Comprehensive hemophilia treatment centers (HTCs) received their first federal funding from the Maternal and Child Health Bureau, Health Resources and Services Administration in 1975. Regional networks developed enabling and strengthening intra- and inter-state cooperation and collaboration. In 1995, the CDC provided direct funding to the twelve hemophilia regions following a Congressional mandate to monitor blood product safety and hemophilia disease progression, including arthropathy. During the past ten years funds from the Hematologic Disease Branch has assisted Region X (Alaska, Idaho, Oregon and Washington) with building center and regional infrastructure including expanded data collection capabilities for surveillance. Funds have also enhanced inter-regional collaboration in the US West. The Universal Data and Serum Specimen collection System for Hemophilia and other bleeding disorders has been enrolling participants since 1997/98 and has provided a robust data bank. During the next five years, Region X in collaboration with other federal regions will begin more focused public health research with the hemophilia and bleeding disorders community that may be extrapolated to other populations with chronic conditions and diagnoses. Region X is an area of the United States with urban, rural and frontier counties. The majority of the population in this region lives north of the 45th parallel. The region also has an incidence of obesity and overweight in hemophilia patients and the general region that mirrors the national averages. The Region X research interests include: 1) whether the health disparities experienced by rural and frontier citizens also extends to persons with bleeding disorders or does care for a bleeding disorder provided by HTCs decrease the health disparities; 2) whether persons living in counties without physicians and/or hospitals have poorer physical and health outcomes compared to others with similar diagnosis, especially persons with milder severity; 3) the impact of less ambient vitamin D on joint disease and bone health/density; and 4) the relationship between perceived ability to engage in activity, actual level of activity, unemployment due to disability, pain and quality of life. ? ? ?
