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: 7279179
• 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/7279179
• 关键词: Prevention; Complications; Bleeding; Disorder; Through

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）：该项目旨在通过评估、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。由位于肯塔基州、北卡罗来纳州、南卡罗来纳州和田纳西州的十个血友病治疗中心组成的区域网络将由北卡罗来纳大学教堂山分校协调，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，北区iv区（包括北卡罗莱纳州、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[HTCs]）共有1848名血友病和其他出血性疾病的活跃患者。血友病患者占总患者的61.5%，血管性血友病占27.6%，其他出血性疾病占10.9%。二零零五年，在职女病人有380名，较二零零四年的总数增加25.2%。近22%的活跃患者来自少数民族，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，导致个人在饮食、锻炼和医疗保健服务方面的行为不佳。该网络将与区域非专业组织和该区域的四个非联邦资助中心合作，提供适当定制的预防信息，旨在减少出血性疾病的并发症和改善整个生命周期的健康，目的是实现和衡量减少并发症的具体结果。此外，该地区将加倍向服务不足的人群（如妇女和少数民族）提供服务，使他们融入HTC系统。将对所有这些努力进行系统评价，以评估其效果。自1998年以来，美国疾病控制与预防中心的通用数据收集（UDC）项目收集了全国18,000多人的样本和数据，为了监测血液供应的安全性，对该项目登记的患者的监测将继续进行。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结果，加速采用健康行为，减少或消除不同种族和种族群体之间以及性别之间的健康差距，并在核心公共卫生基础设施中实现更高的效率。