Prevention of the Complications of Bleeding Disorders Through Hemo Tmt Centers

描述（由申请人提供）：第四区南部出血性疾病项目是由九个联邦资助的血友病治疗中心（HTCs）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强调对出血性疾病护理的主动导向。该方案将进一步实现疾病预防控制中心的使命，即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目的旨在减少出血性疾病相关的并发症和发病率，并促进南四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，因为在宏达医疗中心以外接受治疗的患者死亡率比在联邦资助的宏达医疗中心接受治疗的患者高60% （CDC）。目标将集中在那些来自传统上服务不足人群的患者。预防项目将努力减少对公共卫生系统的影响，例如减少旷工和旷课的天数。RCC将负责通过必要的附属报告、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来评估和监测项目。其他具体项目目标包括：(1)提供持续的艾滋病毒和甲型、乙型和丙型肝炎筛查；(2)促进完善区域信息管理系统、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web的应用程序；(5)扩充数据库，增加与妇女问题和其他重要临床结果相关的额外数据；(6)解决第四南区特有的关于保健差距的关切领域。这个血友病护理项目致力于改善南四区出血性疾病患者的健康生活质量和寿命。针对传统上服务不足人群的预防和外联工作将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，都将提供优质的医疗保健服务。将特别注意主要的健康指标：身体活动、超重和肥胖、免疫和获得保健。

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.