Prevention of Complications of Thalassemia

预防地中海贫血并发症

• 批准号: 7682872
• 负责人: PATRICIA J GIARDINA
• 金额: $ 20万
• 依托单位: WEILL MEDICAL COLL OF CORNELL UNIV
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-09-30 至 2012-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7682872
• 关键词: Prevention; Complications; Thalassemia

ABSTRACT: The model New York Presbyterian Hospital-Weill Medical College of Cornell University (NYPH-WMC) Thalassemia Center is the largest program in the New York area for the care of over 100 thalassemia patients and their families which aims to promote health and improve the quality of life of thalassemia patients. Specifically, the NYPH-WMC aims to provide comprehensive medical, psychosocial and genetic services. A multidisciplinary on-site diagnostic, treatment and support team comprised of the director, a pediatric hematologist, pediatric and adult hepatologists, endocrinologists, cardiologists, radiologist, biochemist, geneticist, social worker and psychologist, genetic counselor, nurse practitioner, and study and outreach coordinators delivers comprehensive preventive services and participates in clinical and basic research to advance the understanding of thalassemia and improve management. Regular transfusions are administered at bi-monthly visits, monthly chemistries, quarterly evaluations and annual assessments including hepatic, endocrine and cardiac evaluations, hearing and eye exams are performed with surveillance and monitoring of clinical outcomes. Consultative comprehensive healthcare services are provided to the local and regional community of thalassemia patients and healthcare providers. Culturally competent screening, genetic counseling and prenatal diagnosis are also provided on-site and in outreach programs to identify those who can benefit from education, treatment and prevention services as well as to assess the needs of the underserved. Collaborations with local and national consumer organizations are maintained with the Thalassemia Action Group (TAG), the Cooley's Anemia Foundation (CAF) and local healthcare providers at smaller non-federally funded regional institutions which care for fewer thalassemia patients. Annual patient/parent educational conferences are conducted and annual medical update symposiums are held for healthcare providers. Comprehensive healthcare services are directed at attaining and measuring specific outcomes to prevent and reduce complications of transfusional iron overload implementing the CDC's Thalassemia Universal Data Collection Surveillance Program for the investigation of seroconversion suspected, blood borne agents and possible bacterial contamination along with other data collection and surveillance efforts. NARRATIVE: The overall purpose of the NYPH-WMC Thalassemia Center's partnership with the CDC is aimed at promoting the health and improving the quality of life of patients with thalassemia by providing a prevention evaluation network to monitor blood safety and the delivery of comprehensive healthcare services to monitor and prevent the complications of transfusional iron overload, and to conduct research to enhance prevention and implement preventive strategies that will advocate and contribute to the development of public health policies.

摘要： 美国康奈尔大学威尔医学院--纽约长老会医院（NYPH-WMC） 地中海贫血中心是纽约地区最大的项目，为100多名地中海贫血患者提供护理 旨在促进地中海贫血患者及其家属的健康，提高地中海贫血患者的生活质量 患者具体而言，NYPH-WMC旨在提供全面的医疗、社会心理和 遗传服务。一个多学科的现场诊断，治疗和支持团队， 主任，儿科血液学家，儿科和成人肝病学家，内分泌学家，心脏病学家， 放射科医生，生物化学家，遗传学家，社会工作者和心理学家，遗传咨询师，执业护士， 研究和外联协调员提供全面的预防服务，并参与 开展临床和基础研究，以提高对地中海贫血的认识并改善管理。 每两个月进行一次定期输血，每月进行一次化学检查，每季度进行一次评估， 年度评估，包括肝脏、内分泌和心脏评估，听力和视力检查， 进行监测和临床结果监测。咨询性综合保健 为当地和区域地中海贫血患者社区提供服务， 提供商还提供文化能力筛查、遗传咨询和产前诊断 现场和外展计划，以确定那些谁可以受益于教育，治疗和 预防服务以及评估服务不足者的需求。与当地和 全国性的消费者组织与地中海贫血行动小组（TAG）、库利氏 贫血基金会（CAF）和当地医疗保健提供者在较小的非联邦资助的区域 照顾地中海贫血患者较少的机构。年度患者/家长教育会议 为医疗保健提供者举办了年度医疗最新情况研讨会。全面 医疗保健服务的目的是实现和衡量具体的成果，以防止和减少 实施CDC地中海贫血通用数据的输血铁过载并发症 用于调查疑似血清转化的血源性病原体的采集监测计划 以及可能的细菌污染沿着其他数据收集和监测工作。说明： NYPH-WMC地中海贫血中心与CDC合作的总体目的是 通过提供一种治疗地中海贫血的药物， 预防评估网络，以监测血液安全和提供综合保健 监测和预防输血铁过载并发症的服务，并进行研究 加强预防和执行预防战略，倡导和促进 制定公共卫生政策。