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

Fred Hutchinson Cancer Research Center, Seattle WA

Investigators

Linked publications & trials

Abstract

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