THALASSEMIA DATA AND BLOOD SPECIMEN COLLECTION SYSTEM

本子项目是利用由NIH/NCRR资助的中心赠款提供的资源的众多研究子项目之一。子项目和研究者（PI）可能已经从另一个NIH来源获得了主要资金，因此可以在其他CRISP条目中表示。列出的机构是中心的，不一定是研究者的机构。理由：在美国患有严重地中海贫血的人数尚不清楚，但估计约为600 - 1000人。位于波士顿，马萨诸塞州，芝加哥，伊利诺伊州，费城，宾夕法尼亚州，纽约，纽约，洛杉矶和加利福尼亚州奥克兰的六个大型地中海贫血治疗中心为大约400名地中海贫血患者提供护理。2002年10月，美国疾病控制与预防中心与这六个地中海贫血治疗中心签订了一项为期5年的合作协议，以建立一个血液安全监测系统，并协助分析常规收集的关于这些人的一套统一的临床数据。目标一：对在这些地中海贫血治疗中心接受治疗的人定期收集的血液样本进行免费检测，以确定是否存在血源性病原体，由疾病预防控制中心提供，以协助治疗中心监测相关感染。检测后，每个血清标本的剩余部分将由疾病预防控制中心用于建立血清库，以便将来可能用于评估这些人使用的血液制品的安全性。目的二：来自该系统的信息，包括参与受试者的人口统计和流行病学数据，将由疾病预防控制中心血液疾病处用于评估血液供应的安全性，并制定和监测干预措施的有效性，这些干预措施旨在履行我们从国会获得的减少或预防地中海贫血并发症的任务。随着疾病预防控制中心继续为这一人群开展预防活动，预计地中海贫血数据和血液标本收集系统将在可预见的未来继续使用。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Rationale: The number of persons with thalassemia major in the US is not known, but is estimated to be about 600 - 1000. Six large thalassemia treatment centers located in Boston, MA, Chicago, IL, Philadelphia, PA, New York, NY, Los Angeles and Oakland, CA provide care to about 400 people with thalassemia. In October 2002, CDC begain a 5yr cooperative agreement with these six thalassemia treatment centers to establish a blood safety monitoring system and to assist with the analysis of a uniform set of clinical data routinely collected on these individuals. Aim I: Free testing of blood speciments collected on a regular basis from persons receiving care in these thalassemia treatment centers for the presence of blood borne pathogens with be offered by CDC to assist the treatment centers in monitoring related infections. After testing, the remainder of each serum specimen will be used by the CDC to establish a serum bank for possible future use in evaluating the safety of blood products used by these persons. Aim II: Information from this system, including demographic and epidemiologic data on the participating subjects, 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 address our mandate from congress, which is to reduce or prevent the complications of thalassemia. It is anticipated that the Thalassemia Data and BloodSpecimen COllection System will continue into the foreseeable future as the CDC continues its prevention activities for this population.