The Clinical Information Shared Resource supports patient registration, a protocol image distribution system and a centralized patient database and research files for the Clinical Research Division. The database and research files capture essential data from over 6,500 patients who have supported more than 25 years of transplantation research in the Division. Approximately 450 new patients are transplanted each year on over 100 research protocols, with each patient enrolled an average of four research protocols covering different aspects of treatment and follow-up. These include: conditioning regimen, marrow and stem cell harvest and mobilization and the prevention and treatment of acute and chronic graft- versus-host disease. Over 2,500 patients are being followed as survivors of transplant; over 1,000 of these for more than five years and over 500 for more than ten years. This provides a large database for characterizing the long-term effects of transplant on survival and quality of life. The shared resource comprises a dedicated data collection staff that is responsible for patient registration and abstracting and entering data from the entire treatment course, staff from the Inpatient and Long Term Follow-Up Units that ensure consistent data generating procedures across clinical units and a programming staff that is responsible for maintaining the Ingres database and all interfaces to it and a protocol image distribution system.
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