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）：该计划的目的是通过评估，监视，外展，教育，咨询和管理来防止血友病和其他出血疾病的并发症。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的区域网络将由北卡罗来纳大学教堂山分校协调，并为血友病和其他流血疾病的人提供全面的护理和预防服务。 2005年，北卡罗来纳州，南卡罗来纳州，肯塔基州和田纳西州的IV-North地区（包括9个血友病治疗中心[HTC]）共有1,848例血友病和其他出血疾病的活性患者。血友病患者占总患者的61.5％，而27.6％的患者患有von Willebrand疾病，10.9％的患者患有其他出血疾病。 2005年，有380名活跃的女性患者，比2004年总数增加了25.2％。几乎22％的活跃患者来自少数民族群体，西班牙裔爆炸性增加。与美国平均值相比，该地区内部的贫困率较高，教育水平较低，使个人易于与饮食，运动和使用医疗服务有关的次优行为。该网络将与该地区的区域外行组织和该地区的四个非养基金中心合作，以提供适当的量身定制的预防信息，旨在减少出血障碍并改善整个寿命的并发症，并旨在达到并衡量并衡量特定成果以减少复杂性。此外，该地区将将其宣传与服务不足的人群（例如妇女和少数民族）相加，以将其整合到HTC系统中。所有这些努力将进行系统评估以评估其功效。自1998年以来全国18,000多人收集了来自18,000多名个人的样本和数据的患者的监视，该项目将继续以监测血液供应的安全性。该网络还将扩展UDC计划，以收集可用于临床研究项目的数据，从而改善患有出血障碍的人的健康成果，加速采用健康行为，减少或消除各种族裔和种族群体之间的健康损失，以及性别之间的健康偏差，以及在核心公共卫生中较高的公共卫生效率的成就。