THALASSEMIA DATA AND BLOOD SPECIMEN COLLECTION SYSTEM

该子项目是利用NIH/NCRR资助的中心赠款提供的资源的许多研究子项目之一。子项目和研究者（PI）可能从另一个NIH来源获得了主要资金，因此可以在其他CRISP条目中表示。所列机构为中心，不一定是研究者所在机构。理由：美国重型地中海贫血患者的数量不详，但估计约为600 - 1000人。位于马萨诸塞州波士顿、伊利诺伊州芝加哥、宾夕法尼亚州费城、纽约州纽约、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约400名地中海贫血患者提供护理。2002年10月，疾病预防控制中心开始与这六个地中海贫血治疗中心达成为期五年的合作协议，建立血液安全监测系统，并协助分析这些人定期收集的一套统一的临床数据。 目标一：由疾病预防控制中心提供的免费血液检测服务，定期从地中海贫血治疗中心接受治疗的人员中收集血液样本，以检测是否存在血液传播的病原体，以协助治疗中心监测相关感染。在测试后，每个血清样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。 目标二：来自该系统的信息，包括参与受试者的人口统计学和流行病学数据，将由疾病预防控制中心血液病分支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，这些干预措施旨在满足国会的要求，即减少或预防地中海贫血并发症。预计地中海贫血数据和血液标本采集系统将在可预见的未来继续进行，因为疾病预防控制中心将继续为这一人群开展预防活动。

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.