Prevention of Complications of Hemophilia Through HTCs

描述(由申请人提供)：血友病综合治疗中心(HTCs)于1975年从卫生资源和服务管理局妇幼保健局获得第一笔联邦资金。发展了促进和加强国家内部和国家间合作与协作的区域网络。1995年，疾控中心根据国会的授权，向12个血友病地区提供了直接资金，以监测血液产品安全和血友病疾病的进展，包括关节疾病。在过去十年中，血液病科的资金帮助X地区(阿拉斯加、爱达荷州、俄勒冈州和华盛顿州)建设中心和地区基础设施，包括扩大监测数据收集能力。基金还加强了美国西部地区之间的合作。血友病和其他出血性疾病的通用数据和血清样本收集系统自1997/98年以来一直在招募参与者，并提供了一个强大的数据库。在接下来的五年里，X区将与其他联邦地区合作，与血友病和出血性疾病社区合作，开始更有针对性的公共卫生研究，这些研究可能会外推到其他患有慢性病和诊断的人群。X区是美国的一个地区，有城市、农村和边境县。这个地区的大多数人口生活在北纬45度以北。该地区也有血友病患者的肥胖和超重发生率，该地区的总体水平反映了全国平均水平。X地区的研究兴趣包括：1)农村和边境居民面临的健康差距是否也扩大到患有出血性疾病的人，或者是否可以减少健康差距；2)居住在没有医生和/或医院的县的人是否比其他被诊断为类似疾病的人，尤其是病情较轻的人，其身体和健康状况更差；3)环境中维生素D较少对关节疾病和骨健康/密度的影响；以及4)自认为的活动能力、实际活动水平、因残疾、疼痛和生活质量而导致的失业之间的关系。

DESCRIPTION (provided by applicant): 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.