Research Initiatives for the Preventions of Complications of Thalassemia

目前的项目将开发和维护管理患者的系统 南加州综合地中海贫血中心(SCCTC)的地中海贫血。这将是 通过1)提供全面的医疗服务，通过以下方式预防并发症 评估、监测、外展、教育、咨询、管理；(2)参加献血 安全监测和监测工作；(3)维持预防评估监测系统，以 评估预防服务的有效性；(4)与非专业组织合作，提供一致的 旨在预防并发症的预防信息；以及(5)发展研究思路和方法，以 确定、测量和修改治疗和随访方案，以最大限度地实现最佳 医疗驱动的结果。南加州综合地中海贫血中心将解决这些问题 目标：1)与其他疾控中心地中海贫血中心密切合作，参与血液安全监测 和国家级研究项目，2)继续积极参与地中海贫血临床 研究网络，3)在该中心发展外展和教育项目，并通过 与北加州地中海贫血中心合作，以及4)维护和开发新的 基于我们当地多学科综合护理模式的数据的研究举措。 南加州全面性地中海贫血的地中海贫血研究计划 该中心一般与输血铁超载的评估和管理有关， 用磁共振成像测量组织铁。基于从以下地点收集的数据的具体项目 CDC综合护理模式，但由CDC计划外部资助，包括1)关系 心脏铁与心功能的关系，2)磁共振在肝铁测定中的应用，3)心脏铁与心功能的关系 去铁剂对心脏铁的清除作用；4)胰铁与心肌铁的关系 胰腺功能。这些研究利用了南加州综合研究所的独特专业知识 该中心地中海贫血中心的联席主任伍德博士是一名心脏病专家和生物医学工程师。 南加州综合地中海贫血中心将继续使用 在提供多学科综合临床管理的背景下收集的数据分析 地中海贫血患者修改治疗方法并生成更正式的假设 减少脑出血患者并发症的治疗和管理方法的研究 地中海贫血和改善他们的健康。项目叙事 在洛杉矶儿童医院实施血液安全监测系统 洛杉矶惠及地中海贫血患者。来自该系统的信息将被使用 由疾控中心血液病分部评估血液供应的安全性 并制定和监测旨在减少或减少 预防地中海贫血并发症。

The current project will develop and maintain systems for the management of patients with thalassemia at the Southern California Comprehensive Thalassemia Center (SCCTC). This will be accomplished by 1) providing comprehensive healthcare services to prevent complications through assessment, surveillance, outreach, education, consultation, and management; (2) participating in blood safety monitoring and surveillance efforts; (3) maintaining a prevention evaluation monitoring system to assess the efficacy of prevention services; (4) collaborating with lay organizations to deliver consistent prevention messages aimed at preventing complications; and (5) develop research ideas and methods to determine, measure, and modify treatment and follow-up protocols to maximize the achievement of optimal medical-driven outcomes. The Southern California Comprehensive Thalassemia Center will address these goals by 1) working closely with the other CDC thalassemia centers to participate in blood safety monitoring and research projects at a national level, 2) continuing active participation in the Thalassemia Clinical Research Network, 3) developing outreach and education programs at this center and by working collaboratively with the Northern California Thalassemia center, and 4) maintaining and developing new research initiatives based on data from our local multidisciplinary comprehensive care model. The thalassemia research initiatives from the Southern California Comprehensive Thalassemia Center in general are related to the assessment and management of transfusional iron overload and measurement of tissue iron by magnetic resonance imaging. Specific projects based on data collected from the CDC comprehensive care model but funded externally to the CDC program include 1) the relationship between cardiac iron and cardiac function, 2) the utility of MRI for the measurement of liver iron, 3) the efficacy of the deferasirox for the removal of cardiac iron, and 4) the relation between pancreatic iron and pancreatic function. These studies leverage the unique expertise of the Southern California Comprehensive Thalassemia Center of the Center co-director, Dr. Wood, who is a cardiologist and biomedical engineer. The Southern California Comprehensive Thalassemia Center will continue the model of using the analysis of data collected in the context of providing multidisciplinary comprehensive clinical management of patients with thalassemia to modify approaches to treatment and to generate hypotheses for more formal study of treatments and management approaches that will reduce the complications of patients with thalassemia and improve their health. Project Narrative To implement a blood safety monitoring surveillance system at Childrens Hospital Los Angeles to benefit persons with thalassemia. Information from this system will be used by the Hematologic Diseases Branch of CDC to assess the safety of the blood supply and to develop and monitor the effectiveness of interventions designed to reduce or prevent the complications of thalassemia.