Background and objective: The management of rare tumors is difficult because of limited information on natural history. Our objective was to describe a long-term comprehensive prospective database with the assumption that with careful attention to patient, predisposing tumor and treatment variables, valuable knowledge could be obtained that could guide management.
Methods: In July of 1982, we began a prospective database of all adult patients admitted to our institution for a surgical procedure for soft tissue sarcoma. Patients were included if they had primary, locally recurrent or metastatic disease undergoing a surgical procedure.
Results: Over 3 decades, we entered 10,000 patients into our prospective soft tissue sarcoma database. Data were entered on a weekly or biweekly schedule with full participation of a multidisciplinary team and a dedicated sarcoma pathologist. Extensive information is available from this database. In this article, we describe distribution by site, histopathology, sex, size, and grade. We utilize this information along with outcome data for local recurrence, distant recurrence, disease specific, and overall survival. The value of molecular diagnosis is illustrated.
Conclusions: Continuous prospective long-term databases are important to obtain knowledge particularly for rare tumors. Such data can be a rich resource for the development of prognostic indicators including nomograms and can be analyzed by Bayesian Belief Networks. These long-term data linked to collection of tumor and germ-line tissue at the time of an initial procedure will remain a resource for future decades.