Prevention of the Complications of Bleeding Disorder Through HTCs

通过 HTC 预防出血性疾病并发症

• 批准号: 7232169
• 负责人: Paul E Monahan
• 金额: $ 56.82万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 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/7232169
• 关键词: blood coagulation disorders; clinical research; cooperative study; disease /disorder prevention /control; epidemiology; hemophilia As; human subject; medical complication; outcomes research; von Willebrand' s disease

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.

描述（由申请人提供）：该项目的目的是通过评估、监测、外展、教育、咨询和管理来预防血友病和其他出血性疾病的并发症。查佩尔山的北卡罗来纳州将协调肯塔基州、北卡罗来纳州、南卡罗来纳州和田纳西州的10个血友病治疗中心的区域网络，为血友病和其他出血性疾病患者提供全面的护理和预防服务。2005年，IV区-北部（包括北卡罗来纳州、南卡罗来纳州、肯塔基州和田纳西州的9个血友病治疗中心[HTC]）共有1，848例血友病和其他出血性疾病患者。血友病患者占总患者的61.5%，而27.6%患有血管性血友病，10.9%患有其他出血性疾病。2005年，有380名女病人在接受治疗，比2004年的总数增加了25.2%。近22%的活跃患者来自少数民族群体，西班牙裔患者呈爆炸性增长。与美国的平均水平相比，该地区的贫困率较高，教育水平较低，使个人在饮食，运动和使用医疗保健服务方面倾向于次优行为。该网络将与该地区的非专业组织和四个非联邦资助的中心合作，提供适当的预防信息，旨在减少出血性疾病的并发症，改善整个生命周期的健康状况，旨在实现和衡量减少并发症的具体成果。此外，该区域将加倍努力，向妇女和少数民族等得不到充分服务的人口开展外联活动，将他们纳入人道主义援助系统。将对所有这些努力进行系统评价，以评估其效力。自1998年以来，疾病预防控制中心的通用数据收集（UDC）项目已收集了全国18，000多人的样本和数据，将继续监测患者，以监测血液供应的安全性。该网络还将扩大UDC计划，以收集可用于临床研究项目的数据，从而改善出血性疾病患者的健康状况，加速健康行为的采用，减少或消除各民族和种族群体之间以及性别之间的健康差异，并提高核心公共卫生基础设施的效率。