Prevention of the Complications of Bleeding Disorders Through Hemo Tmt Centers

通过血液 TMT 中心预防出血性疾病并发症

• 批准号: 7232160
• 负责人: PATRICIA DOMINIC
• 金额: $ 42.64万
• 依托单位: HEMOPHILIA OF GEORGIA, INC.
• 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/7232160
• 关键词: blood coagulation disorders; clinical research; cooperative study; disease /disorder prevention /control; epidemiology; hemophilia As; human subject; medical complication; medically underserved population; outcomes research; von Willebrand' s disease

DESCRIPTION (provided by applicant): The Region IV South Bleeding Disorders Program is a network of nine federally funded Hemophilia Treatment Centers (HTCs) that provide comprehensive care and prevention services to persons with bleeding disorders in the states of Alabama, Florida, Georgia, and Mississippi. The Regional Core Center (RCC) office is located in Atlanta, Georgia and shares an office with Hemophilia of Georgia, Inc. The RCC emphasizes a pro-active orientation toward bleeding disorder care. This program will further the mission of the CDC in promoting heath and quality of life in persons with bleeding disorders by preventing and controlling disease, injury and disability. The goals and objectives of this regional program were designed to reduce the complications and morbidity associated with bleeding disorders, as well as to promote access to integrated and family-centered services for individuals with bleeding disorders in Region IV South. Comprehensive systems of care are necessary, as those receiving care outside of an HTC have a 60% higher mortality rate than those receiving care in federally funded HTCs (CDC). Objectives will focus on those patients from traditionally underserved populations. Prevention programs will strive to reduce the impact on the public health system by, for example, decreasing the number of days missed from work and school. The RCC will be responsible for program evaluation and monitoring through required affiliate reporting, data reports, assessment of Universal Data Collection (UDC) Project participation, site visits, needs assessments, and consumer input. Other specific project objectives include: (1) provide continuous screening for HIV and Hepatitis A, B, and C; (2) facilitate improved regional information management systems, data collection and evaluation; (3) expand the UDC cohort through recruitment of individuals with genetic bleeding disorders; (4) transition the national database to a web-based application; (5) expand the database with additional relevant date related to women's issues and other important clinical outcomes; and (6) address areas of concern unique to Region IV South regarding healthcare disparities. This hemophilia care program strives to improve the quality and years of healthy lives for those living with bleeding disorders in Region IV South. Prevention and outreach efforts aimed at the traditionally underserved will eliminate the region's health disparities by providing quality healthcare services, regardless of an individual's race, ethnicity, age, or gender. Particular attention will be paid to the leading health indicators: physical activity, overweight and obesity, immunization and access to health care.

描述（由申请人提供）：第四区南部出血性疾病计划是一个由九个联邦资助的血友病治疗中心 (HTC) 组成的网络，为阿拉巴马州、佛罗里达州、佐治亚州和密西西比州的出血性疾病患者提供全面的护理和预防服务。区域核心中心 (RCC) 办公室位于佐治亚州亚特兰大，与佐治亚州血友病公司共用一个办公室。RCC 强调积极主动地进行出血性疾病护理。该计划将进一步推进 CDC 的使命，即通过预防和控制疾病、伤害和残疾来促进出血性疾病患者的健康和生活质量。该区域计划的目的和目标旨在减少与出血性疾病相关的并发症和发病率，并促进第四区南部出血性疾病患者获得综合和以家庭为中心的服务。全面的护理系统是必要的，因为在 HTC 之外接受护理的人的死亡率比在联邦资助的 HTC (CDC) 中接受护理的人高 60%。目标将集中于那些传统上服务不足的人群的患者。预防计划将努力减少对公共卫生系统的影响，例如减少缺勤和缺课的天数。 RCC 将负责通过所需的附属报告、数据报告、通用数据收集 (UDC) 项目参与评估、实地考察、需求评估和消费者意见来进行项目评估和监控。其他具体项目目标包括： (1) 提供艾滋病毒和甲型、乙型和丙型肝炎的持续筛查； （二）促进完善区域信息管理系统、数据收集和评估； (3) 通过招募患有遗传性出血性疾病的个体来扩大 UDC 队列； (4) 将国家数据库转变为基于网络的应用程序； (5) 扩大数据库，增加与妇女问题和其他重要临床结果相关的数据； (6) 解决第四区南部特有的医疗保健差异问题。该血友病护理计划致力于提高第四区南部出血性疾病患者的质量和健康生活年限。针对传统上服务不足的人群的预防和外展工作将通过提供优质的医疗保健服务来消除该地区的健康差距，无论个人的种族、民族、年龄或性别如何。将特别关注主要健康指标：体力活动、超重和肥胖、免疫接种和获得医疗保健的机会。