The Scandinavian Sarcoma Group Central Register: 6,000 patients after 25 years of monitoring of referral and treatment of extremity and trunk wall soft-tissue sarcoma

Clement Trovik, Henrik C.F. Bauer, Emelie Styring, Kirsten Sundby Hall, Fredrik Vult Von Steyern, Sigvard Eriksson, Ingela Johansson, Mika Sampo, Minna Laitinen, Anders Kalén, Halldór Jónsson, Nina Jebsen, Mikael Eriksson, Erkki Tukiainen, Najme Wall, Olga Zaikova, Helgi Sigurðsson, Tuula Lehtinen, Bodil Bjerkehagen, Mikael SkorpilGeir Egil Eide, Elisabeth Johansson, Thor A. Alvegard

    Research output: Contribution to journalArticlepeer-review

    20 Scopus citations

    Abstract

    Purpose — We wanted to examine the potential of the Scandinavian Sarcoma Group (SSG) Central Register, and evaluate referral and treatment practice for soft-tissue sarcomas in the extremities and trunk wall (STS) in the Nordic countries. Background — Based on incidence rates from the literature, 8,150 (7,000–9,300) cases of STS of the extremity and trunk wall should have been diagnosed in Norway, Finland, Iceland, and Sweden from 1987 through 2011. The SSG Register has 6,027 cases registered from this period, with 5,837 having complete registration of key variables. 10 centers have been reporting to the Register. The 5 centers that consistently report treat approximately 90% of the cases in their respective regions. The remaining centers have reported all the patients who were treated during certain time periods, but not for the entire 25-year period. Results — 59% of patients were referred to a sarcoma center untouched, i.e. before any attempt at open biopsy. There was an improvement from 52% during the first 5 years to 70% during the last 5 years. 50% had wide or better margins at surgery. Wide margins are now achieved less often than 20 years ago, in parallel with an increase in the use of radiotherapy. For the centers that consistently report, 97% of surviving patients are followed for more than 4 years. Metastasis-free survival (MFS) increased from 67% to 73% during the 25-year period. Interpretation — The Register is considered to be representative of extremity and trunk wall sarcoma disease in the population of Scandinavia, treated at the reporting centers. There were no clinically significant differences in treatment results at these centers.

    Original languageEnglish (US)
    Pages (from-to)341-347
    Number of pages7
    JournalActa Orthopaedica
    Volume88
    Issue number3
    DOIs
    StatePublished - May 4 2017

    ASJC Scopus subject areas

    • Surgery
    • Orthopedics and Sports Medicine

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