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）：IV区南部出血疾病计划是一个由9个联邦政府资助的血友病治疗中心（HTC）组成的网络，该网络为在阿拉巴马州，佛罗里达州，乔治亚，乔治亚和密西西比州的州流血疾病的人提供全面的护理和预防服务。区域核心中心（RCC）办事处位于佐治亚州亚特兰大，与佐治亚州的血友病公司共享办公室。RCC强调了针对出血疾病护理的积极主动方向。该计划将通过预防和控制疾病，伤害和残疾来促进疾病预防控制中心（CDC）在促进卫生和生活质量中的使命。该区域计划的目标和目标旨在减少与出血疾病相关的并发症和发病率，并促进IV South地区流血疾病的患者的综合和以家庭为中心的服务的机会。需要全面的护理系统，因为与在联邦资助的HTC（CDC）中接受护理的人（CDC）相比，接受HTC以外的那些接受护理的人的死亡率高60％。目标将集中在传统服务不足的人群中。例如，预防计划将努力通过减少工作和学校错过的天数来减少对公共卫生系统的影响。 RCC将通过所需的会员报告，数据报告，通用数据收集评估（UDC）项目参与，现场访问，需求评估和消费者投入来负责计划评估和监视。其他特定的项目目标包括：（1）提供HIV和肝炎A，B和C的连续筛查； （2）促进改进的区域信息管理系统，数据收集和评估； （3）通过招募遗传出血疾病的个体来扩展UDC队列； （4）将国家数据库转换为基于Web的应用程序； （5）扩展数据库，并具有与妇女问题和其他重要临床结果相关的其他相关日期； （6）解决有关医疗保健差异的IV区域所特有的关注领域。该血友病护理计划致力于改善IV South地区出血疾病的人们的健康生活质量和健康生活。针对传统上服务不足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异，而不论个人的种族，种族，年龄或性别。将特别注意主要的健康指标：体育活动，超重和肥胖，免疫和获得医疗保健。