Prevention of Complications of Thalassemia

预防地中海贫血并发症

• 批准号: 7432654
• 负责人: PATRICIA J GIARDINA
• 金额: $ 20.63万
• 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/7432654
• 关键词: Prevention; Complications; Thalassemia

DESCRIPTION (provided by applicant): 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.

描述(由申请人提供)：纽约长老会医院-康奈尔大学威尔医学院(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及其家人提供护理，旨在促进地中海贫血患者的健康和提高他们的生活质量。具体地说，NYPH-WMC旨在提供全面的医疗、心理社会和遗传服务。由主任、一名儿科血液科医生、儿科和成人肝科医生、内分泌科医生、心脏病专家、放射科医生、生物化学家、遗传学家、社会工作者和心理学家、遗传顾问、护士、研究和外展协调员组成的多学科现场诊断、治疗和支持小组提供全面的预防服务，并参与临床和基础研究，以促进对地中海贫血的了解和改善管理。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，每年进行一次评估，包括肝脏、内分泌和心脏评估、听力和视力检查，并监测和监测临床结果。向当地和地区的地中海贫血患者和保健提供者提供咨询性综合保健服务。还在现场和外联方案中提供具有文化能力的筛查、遗传咨询和产前诊断，以确定哪些人可以从教育、治疗和预防服务中受益，并评估未得到充分服务的人的需求。与地方和国家消费者组织的合作与地中海贫血行动小组(TAG)、库利贫血基金会(CAF)和较小的非联邦资助的地区性机构的当地医疗保健提供者保持着合作，这些机构照顾较少的地中海贫血患者。每年举行患者/家长教育会议，并为医疗保健提供者举办年度医学更新研讨会。全面的医疗保健服务旨在实现和衡量预防和减少输血铁超载并发症的具体结果，实施疾控中心的地中海贫血全球数据收集监测计划，以调查疑似血清转换、血液传播剂和可能的细菌污染以及其他数据收集和监测工作。简介：NYPH-WMC地中海贫血中心与疾控中心合作的总体目的是通过提供预防评估网络来监测血液安全和提供全面的医疗服务以监测和预防输血铁负荷过高的并发症，并进行研究以加强预防和实施预防战略，以促进和促进公共卫生政策的制定，从而促进地中海贫血患者的健康和提高生活质量。