Research Initiatives for the Preventions of Complications of Thalassemia

目前的项目将开发和维护管理患有 南加州地中海贫血综合中心（SCCTC）的地中海贫血。这将是 通过1）提供全面的医疗保健服务，以预防并发症， 评估、监测、外展、教育、咨询和管理;（2）参与血液 安全监测和监督工作;（3）维持预防评估监测系统， 评估预防服务的效果;（4）与非专业组织合作， 预防并发症的预防信息;（5）发展研究思路和方法， 确定、测量和修改治疗和随访方案，以最大限度地实现最佳治疗效果。 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 目标是：1）与其他CDC地中海贫血中心密切合作，参与血液安全监测 2）继续积极参与地中海贫血临床研究， 研究网络，3）在该中心并通过工作开发外展和教育计划 与北方加州地中海贫血中心合作，以及4）维持和开发新的 基于我们当地多学科综合护理模式的数据的研究举措。 南加州地中海贫血综合研究中心的地中海贫血研究计划 中心一般与输血性铁超载的评估和管理有关， 通过磁共振成像测量组织铁。根据收集的数据开展的具体项目 疾病预防控制中心综合护理模式，但资助外部的疾病预防控制中心计划包括1）关系 心脏铁和心脏功能之间的关系，2）MRI用于测量肝脏铁的实用性，3） 地拉罗司用于去除心脏铁的功效，以及4）胰腺铁与 胰腺功能这些研究充分利用了南加州综合大学的独特专业知识， 地中海贫血中心的中心联合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 分析在提供多学科综合临床管理的背景下收集的数据， 地中海贫血患者修改治疗方法，并产生更正式的假设， 研究治疗和管理方法，以减少患者的并发症， 地中海贫血，改善他们的健康。项目叙述 在洛杉矶儿童医院实施血液安全监测系统 使地中海贫血症患者受益。该系统的信息将用于 由疾病预防控制中心血液病分支评估血液供应的安全性 并制定和监测旨在减少或 预防地中海贫血的并发症。

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.