Prevention of Complications of Hemophilia Through HTCs

通过 HTC 预防血友病并发症

• 批准号: 7895823
• 负责人: ROBINA INGRAM-RICH
• 金额: $ 21.49万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-09-30 至 2011-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7895823
• 关键词: Prevention; Complications; Hemophilia; Through; HTCs

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.

描述（由申请人提供）：综合血友病治疗中心 (HTC) 于 1975 年从妇幼保健局、卫生资源和服务管理局获得第一笔联邦资金。区域网络的发展促进并加强了州内和州间的合作与协作。 1995 年，根据国会授权监测血液制品安全和血友病疾病进展（包括关节病），疾病预防控制中心向 12 个血友病地区提供了直接资金。在过去的十年中，血液疾病处的资金协助 X 区（阿拉斯加州、爱达荷州、俄勒冈州和华盛顿州）建设中心和区域基础设施，包括扩大监测数据收集能力。资金还加强了美国西部的区域间合作。血友病和其他出血性疾病通用数据和血清样本采集系统自 1997/98 年以来一直在招募参与者，并提供了强大的数据库。在接下来的五年中，X 区将与其他联邦地区合作，开始针对血友病和出血性疾病群体进行更有针对性的公共卫生研究，这些研究可能会推广到其他患有慢性病和诊断的人群。 X 区是美国的一个地区，拥有城市、农村和边境县。该地区的大多数人口居住在北纬 45 度线以北。该地区血友病患者肥胖和超重的发生率也与全国平均水平相当。 X 区的研究兴趣包括：1）农村和边疆公民所经历的健康差异是否也延伸到患有出血性疾病的人，或者 HTC 提供的出血性疾病护理是否会减少健康差异； 2) 与具有类似诊断的其他人相比，居住在没有医生和/或医院的县的人的身体和健康状况是否较差，尤其是病情较轻的人； 3) 环境维生素 D 含量较低对关节疾病和骨骼健康/密度的影响； 4) 感知的活动能力、实际活动水平、因残疾而失业、疼痛和生活质量之间的关系。