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 graft-versus-host disease (GVHD) and to assist investigators in obtaining information that is needed for individual research projects but is not routinely collected. Follow-up data focused on an ongoing assessment of therapy-related complications will be obtained from two groups of patients. One group is a population of more than 1800 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 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 questionnaires 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 summarize 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 of accurate information from 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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