title: 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.
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.
authors.affiliation: a Department Musculo-Skeletal Tumor Service/Oncology , Haukeland University Hospital , Bergen , Norway.
authors.forename: Clement
authors.initials: C
authors.lastname: Trovik
authors.affiliation: b Department Orthopedics/Oncology Service , Karolinska Hospital , Stockholm , Sweden.
authors.forename: Henrik C F
authors.initials: HCF
authors.lastname: Bauer
authors.affiliation: c Department Orthopedics , Lund University, Skåne University Hospital , Lund , Sweden.
authors.forename: Emelie
authors.initials: E
authors.lastname: Styring
authors.affiliation: d Department Oncology , Oslo University Hospital, Norwegian Radium Hospital , Oslo , Norway.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Sundby Hall
authors.affiliation: c Department Orthopedics , Lund University, Skåne University Hospital , Lund , Sweden.
authors.forename: Fredrik
authors.initials: F
authors.lastname: Vult Von Steyern
authors.affiliation: e Department Orthopedics , Sahlgrenska Hospital , Gothenburg , Sweden.
authors.forename: Sigvard
authors.initials: S
authors.lastname: Eriksson
authors.affiliation: f Department Orthopedics , Norrland University Hospital , Umeå , Sweden.
authors.forename: Ingela
authors.initials: I
authors.lastname: Johansson
authors.affiliation: g Department Oncology , Helsinki University Hospital , Helsinki , Finland.
authors.forename: Mika
authors.initials: M
authors.lastname: Sampo
authors.affiliation: h Department Orthopedics , Tampere University Hospital , Tammerfors , Finland.
authors.forename: Minna
authors.initials: M
authors.lastname: Laitinen
authors.affiliation: i Department Orthopedics , Linköping University Hospital , Linköping , Sweden.
authors.forename: Anders
authors.initials: A
authors.lastname: Kalén
authors.affiliation: j Department Orthopedics , Landspitalin , Reykjavik , Iceland.
authors.forename: Halldór
authors.initials: H
authors.lastname: Jónsson
authors.affiliation: a Department Musculo-Skeletal Tumor Service/Oncology , Haukeland University Hospital , Bergen , Norway.
authors.forename: Nina
authors.initials: N
authors.lastname: Jebsen
authors.affiliation: k Department Oncology , Lund University Hospital , Lund , Sweden.
authors.forename: Mikael
authors.initials: M
authors.lastname: Eriksson
authors.affiliation: l Department Plastic Surgery , Helsinki University Hospital , Helsinki , Finland.
authors.forename: Erkki
authors.initials: E
authors.lastname: Tukiainen
authors.affiliation: m Department Oncology , Linköping University Hospital , Linköping , Sweden.
authors.forename: Najme
authors.initials: N
authors.lastname: Wall
authors.affiliation: n Department Orthopedics , Oslo University Hospital, Norwegian Radium Hospital , Oslo , Norway.
authors.forename: Olga
authors.initials: O
authors.lastname: Zaikova
authors.affiliation: o Department Oncology , Landspitalin , Reykjavik , Iceland.
authors.forename: Helgi
authors.initials: H
authors.lastname: Sigurðsson
authors.affiliation: p Department Oncology , Tampere University Hospital , Tammerfors , Finland.
authors.forename: Tuula
authors.initials: T
authors.lastname: Lehtinen
authors.affiliation: q Department Pathology , Oslo University Hospital, Norwegian Radium Hospital , Oslo , Norway.
authors.forename: Bodil
authors.initials: B
authors.lastname: Bjerkehagen
authors.affiliation: r Department Radiology, Akademiska Sjukhuset, Uppsala, and Department of Molecular Medicine and Surgery , Karolinska Institute , Stockholm , Sweden.
authors.forename: Mikael
authors.initials: M
authors.lastname: Skorpil
authors.affiliation: s Department Centre for Clinical Research , Haukeland University Hospital , Bergen , Norway.|t Department Department of Global Public Health and Primary Care , University of Bergen , Norway.
authors.forename: Geir
authors.initials: G
authors.lastname: Egil Eide
authors.affiliation: u Department Cancer Epidemiology , Lund University Hospital , Lund , Sweden.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Johansson
authors.affiliation: u Department Cancer Epidemiology , Lund University Hospital , Lund , Sweden.
authors.forename: Thor A
authors.initials: TA
authors.lastname: Alvegard
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001706:Biopsy; D002648:Child; D002675:Child, Preschool; D005121:Extremities; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D060787:Neoplasm Grading; D009364:Neoplasm Recurrence, Local / Q000453:epidemiology; D012017:Referral and Consultation / Q000706:statistics & numerical data; D012042:Registries; D012509:Sarcoma / Q000175:diagnosis / Q000453:epidemiology / Q000473:pathology / Q000556:secondary / Q000628:therapy*; D012537:Scandinavian and Nordic Countries / Q000453:epidemiology; D012983:Soft Tissue Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000473:pathology / Q000628:therapy*; D060726:Torso