Prevention of Complications of Thalassemia

描述（由申请人提供）：模范纽约长老会医院-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改善生活质量。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、治疗和支持小组由主任、儿童血液学家、儿童和成人肝病学家、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、执业护士以及研究和外联协调员组成，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并改善管理。在双月就诊时进行定期输血，每月进行化学检查，进行季度评估和年度评估，包括肝脏、内分泌和心脏评估，进行听力和眼科检查，并对临床结果进行监测和监测。向地方和区域社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。在现场和外展项目中也提供符合文化要求的筛查、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，并评估服务不足者的需求。地中海贫血行动小组（TAG）、库利贫血基金会（CAF）以及较小的非联邦资助区域机构的当地医疗保健提供者与地方和国家消费者组织保持合作，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，每年为医疗保健提供者举行医疗更新专题讨论会。全面的医疗保健服务旨在获得和衡量特定的结果，以预防和减少输血铁超载的并发症，实施疾病预防控制中心的地中海贫血通用数据收集监测计划，调查血清转化可疑、血液传播媒介和可能的细菌污染，以及其他数据收集和监测工作。叙述:NYPH-WMC地中海贫血中心与CDC合作的总体目的是通过提供一个预防评估网络来监测血液安全性，并提供全面的医疗服务来监测和预防输血铁超载的并发症，从而促进地中海贫血患者的健康和改善生活质量。开展研究，加强预防和实施预防性战略，倡导和促进公共卫生政策的制定。

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.