Medical Oncology

Objective: Present how the SSG register of bone and soft tissue sarcoma patients has an important role for ensuring quality control and as a basis for research projects. Methods: The SSG Register was initiated in 1986 and more than 5000 patients from sarcoma centers in Finland, Norway and Sweden have been accrued. Patient data was registered at the participating institutions. For in-depth studies, clinical data was reviewed and completed and the histopathology reclassified by the SSG Pathology Board. Results: For quality control, changes in referral and treatment of soft tissue sarcoma was assessed in 1851 soft tissue sarcoma patients treated 1986–97. 63% were referred before open biopsy or excision. Referral improved for deep-seated lesions but not subcutaneous. Fine-needle aspiration for cytologic diagnosis was used in 81%. The amputation rate decreased from 15% to 9%, surgical margins did not improve, but the overall use of radiotherapy increased from 20% to 30%. Studies of local recurrence of soft tissue sarcoma was based on 1613 patients treated 1986–95. The local recurrence rate was 17%, but for high-grade deep-seated lesions 26%. After a first local recurrence, the risk of subsequent recurrences was 30%, and the overall risk of amputation for local recurrence was 22%. Local recurrence was associated with a high risk of subsequent metastases but did not appear to be an important cause of metastases. Studies on synovial sarcoma was based on 104 patients 1986–94. In a population based study of all patients in Sweden during this time-period, the median age was 38 years, and adjusted for age, the highest incidence was in 50–60 year olds. The 5 and 7 years survival rates were 0.76 and 0.69. Large size, local recurrence, Grade IV, MIB1 index > 10, and SYT-SSX fusion transcript was associated with metastases. Conclusion: These studies show that a multi-institutional sarcoma registry can be used both for monitoring treatment and as a basis for in-depth studies. Based on these studies, guidelines for radiotherapy in soft tissue sarcoma have been changed and we have been able to show that referral to sarcoma centers have improved, leading to lower local recurrence rates.