This core component will serve to procure long-term follow-up outcome data from patients who have participated in clinical research studies sponsored by this grant. Additional goals are to assist patients and referring physicians in management of late complications such as chronic GVHD and to assist investigators in obtaining information that is not routinely collected when needed for individual research projects. Follow- up data focused on an ongoing assessment of therapy-related complications will be obtained from two groups of patients. One groups is a population of more than 500 patients who are currently being followed at intervals from less than 1 year to more than 25 years after previous treatment at the FHCRC. The other group will include future patients enrolled in studies described in Projects 1, 3, 4 and 5 of this grant application. Three methods will be used to obtain data. First, a baseline questionnaire will be completed by patients before they return to the care of the referring physician, and comprehensive update questions will be sent to all patients at 6 months and 1 year after treatment and at annual intervals thereafter. Second, a diagnostic checklist will be sent to referring physicians when patients return questionnaires. Third, medical records will be requested from referring physicians. Authorization for access to medical records will be obtained when questionnaires are sent to patients. Key data will be verified by cross-referencing the three sources, and an annotated database will be constructed to summarized information from all three sources. Questionnaire items will be assessed to determine sensitivity and specificity when compared with information from the physician's diagnostic checklist and medical records, and algorithms will be developed to allow tailoring of questionnaires in order to optimize the yield for accurate information form as few items as possible. Access to information in the database will enable investigators to determine the long-term outcome of clinical research studies sponsored by the program.
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