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: 7895819
• 负责人: Christine Luise Kempton
• 金额: $ 34.27万
• 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/7895819
• 关键词: Prevention; Complications; Bleeding; Disorders; Through

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）：区域IV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，为亚拉巴马、佛罗里达、格鲁吉亚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）办公室位于格鲁吉亚亚特兰大，与Hemophilia of格鲁吉亚，Inc.共用一个办公室。RCC强调对出血性疾病护理的主动导向。该计划将进一步推动疾病预防控制中心的使命，通过预防和控制疾病、伤害和残疾，促进出血性疾病患者的健康和生活质量。该区域方案的目标和宗旨旨在减少与出血性疾病相关的并发症和发病率，以及促进第四南部地区出血性疾病患者获得以家庭为中心的综合服务。全面的护理系统是必要的，因为那些在HTC之外接受护理的人的死亡率比那些在联邦资助的HTC（CDC）接受护理的人高出60%。目标将集中在那些来自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，减少工作和学校的缺勤天数。RCC将负责通过要求的附属机构报告、数据报告、通用数据收集（UDC）项目参与评估、现场访问、需求评估和消费者输入进行项目评估和监测。其他具体项目目标包括：（1）提供艾滋病毒和甲型、B和丙型肝炎的持续筛查;（2）促进改进区域信息管理系统、数据收集和评估;（3）通过招募遗传性出血性疾病患者扩大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有关的数据;（6）解决南部第四区在保健差异方面特有的关切领域。该血友病护理计划致力于提高IV区南部出血性疾病患者的健康生活质量和健康生活年限。针对传统上得不到充分服务的人群的预防和推广工作将通过提供高质量的医疗保健服务，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：体育活动、超重和肥胖、免疫接种和获得保健。