Core--Long-Term Follow-Up and Chronic GVHD

这一核心收集患者的长期随访数据 华盛顿大学西雅图癌症护理联盟的造血细胞移植(HCT) 医疗中心或儿童医院和区域医疗中心根据弗雷德制定的协议 Hutchinson癌症研究中心作为该项目赞助的临床研究的一部分。使用 考虑到这一重点，该核心单位的服务涉及几个密切相关的领域：识别和 晚期并发症的管理、数据收集、数据库汇编和效率评估， 数据收集和数据存储系统的准确性、质量和实用性。慢性移植物与- 宿主疾病和晚期感染是需要支持的并发症中的突出问题。 从这个核心单元。已经制定了各种机制来支持这一总体目标。 A)该核心将继续收集长期数据，重点是存活率、治疗相关并发症、 健康及与健康有关的生活质素与本会赞助的临床研究有关 格兰特。这包括以前研究中目前正在随访的患者的回顾队列。 以及将要登记参加研究的患者的预期队列。为此目的，已经建立了一个系统来跟踪和保持与 患者和转诊医生，以便在指定的时间点收集数据 治疗。 B)该核心将继续协助调查人员获取非常规收集的信息 当个人研究项目需要时。 C)该核心将继续查明干扰长期后续行动的障碍，并制定方法 这可能会提高参与度。 D)该核心将继续评价在数据收集和数据库中采用的研究方法 管理，包括所使用的工具的效率、可靠性、有效性和实用性 LTFU核心。 从这个核心单元产生的数据将帮助项目负责人识别后期并发症 并帮助制定改进管理或预防这些疾病的方法 并发症。这些数据可能有助于产生关于后期风险因素的假设驱动的研究 并发症，导致晚期并发症的病理生理学，以及治疗方法的发展 预防HCT术后远期并发症。

This Core collects long-term follow-up data for patients who have had hematopoietic cell transplantation (HCT) at the Seattle Cancer Care Alliance, University of Washington Medical Center or Children's Hospital and Regional Medical Center under protocols developed at the Fred Hutchinson Cancer Research Center as part of clinical research studies sponsored by this program. With this focus in mind, the services of this core unit address several closely related areas: identification and management of late complications, data collection, database assembly and evaluation of the efficiency, accuracy, quality and utility of the data collection and the system in which the data are stored. Chronic graftversus- host disease and late infections are prominent among the complications to be followed with support from this core unit. A variety of mechanisms have been developed to support this overall goal. a) This Core will continue to collect long-term data focused on survival, therapy-related complications, health and health-related quality of life relevant to the clinical research studies sponsored by this grant. This includes the retrospective cohort of patients currently in follow-up from previous studies and the prospective cohort of patients to be enrolled in studies. For this purpose, a system has been established to track and maintain contact with patients and referring physicians so that data can be collected at specified time points after treatment. b) This Core will continue to assist investigators in obtaining information that is not routinely collected when needed for individual research projects. c) This Core will continue to identify barriers that interfere with long-term follow-up and develop methods that could improve participation. d) This Core will continue to evaluate the research methods employed in data collection and database management, including the efficiency, reliability, validity and utility of the instruments used in the LTFU core. The data generated from this core unit will assist project leaders in the identification of late complications after HCT and help in the development of methods for improved management or prevention of these complications. The data could help to generate hypothesis-driven research concerning risk factors for late complications, the pathophysiology leading to late complications, and the development of methods for preventing late complications after HCT.