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Sarcoma Research with Cancer Registry Data: Data and Peculiarities of Germany in the Light of Other Countries.
Zeissig, Sylke Ruth; Emrich, Katharina; Reinwald, Fabian; Kasper, Bernd; Kleihues-van Tole, Kees; Justenhoven, Christina; Wardelmann, Eva; Hohenberger, Peter.
Affiliation
  • Zeissig SR; Institute of Clinical Epidemiology and Biometry (ICE-B), Julius-Maximilians-Universitat Wurzburg, Wuerzburg, Germany.
  • Emrich K; Bavarian Cancer Registry-Regional Center Wurzburg, Bavarian Health and Food Safety Authority, Wuerzburg, Germany.
  • Reinwald F; Association of German Tumor Centers (ADT), Berlin, Germany.
  • Kasper B; Cancer registry of Rhineland-Palatinate gGmbH, Mainz, Germany.
  • Kleihues-van Tole K; Cancer registry of Rhineland-Palatinate gGmbH, Mainz, Germany.
  • Justenhoven C; Sarcoma Unit, Mannheim Cancer Center, Mannheim University Medical Center, University of Heidelberg, Mannheim, Germany.
  • Wardelmann E; Association of German Tumor Centers (ADT), Berlin, Germany.
  • Hohenberger P; Cancer registry of Rhineland-Palatinate gGmbH, Mainz, Germany.
Oncol Res Treat ; 46(9): 370-381, 2023.
Article in En | MEDLINE | ID: mdl-37379812
INTRODUCTION: Sarcomas are documented in population-based and in clinic-associated databases. This study evaluated the status quo regarding the potential and obstacles of cancer registry-based research on sarcomas exemplified by Germany in comparison to similar databases in the US and Europe. Completeness and quality of data are discussed based on statistical analyses of a pooled data set established for the German Cancer Congress 2020. METHODS: We analyzed data derived from 16 German institutions (federal state cancer registries and some facility-based registries). Malignant sarcomas in adults diagnosed between 2000 and 2018 with information on histology were grouped according to the WHO classification of soft tissue and bone tumors. Descriptive analyses of the study population regarding the distribution of age, sex, histology, localization of primary tumors, and metastases were performed. Survival for the ten most frequent histological groups and UICC stages was evaluated according to Kaplan-Meier and Cox regression. Time interval between surgery and subsequent radiation was calculated. RESULTS: The initial data set contained 35,091 sarcomas. After several steps of data cleaning, 28,311 patients with known sex and unambiguous assignment to a histological subgroup remained (13,682 women and 14,629 men). Between 40 and 54 years, women were more likely to develop sarcomas, whereas in the older age groups more men were affected. Gastrointestinal stromal tumors, fibroblastic, and myofibroblastic tumors, smooth muscle tumors (mostly non-uterine leiomyosarcomas), and adipocytic tumors represented 48% of all sarcomas. Preferential sites for fibrosarcomas were the limbs, the trunk, and the head and neck region. The liposarcoma occurred most frequently on the trunk and limbs. Distant primary metastases were mostly located in the lung (43%), followed by the liver (14%), and bones (13%). Vascular and smooth muscle tumors showed the worst survival prognosis (5-year survival: approx. 15%, median survival approx. 8-16 months), whereas in low stages, the probability of survival of many sarcoma patients was beyond 5 years. Adjuvant radiotherapy was applied within 90 days in 71% of patients (n = 2,534). CONCLUSION: Our results correspond to the data from the literature. However, a lack of data quality and completeness hampers further meaningful analyses, especially nonspecific or missing information about morphology and stage. Compared to some other countries, a comprehensive database is presently missing in Germany. However, currently, there are important efforts and legislative initiatives to create a comprehensive database on a national level within the near future.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Sarcoma / Soft Tissue Neoplasms / Bone Neoplasms Type of study: Observational_studies / Risk_factors_studies Limits: Adult / Aged / Female / Humans / Male Country/Region as subject: Europa Language: En Journal: Oncol Res Treat Year: 2023 Document type: Article Affiliation country: Germany Country of publication: Switzerland

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Sarcoma / Soft Tissue Neoplasms / Bone Neoplasms Type of study: Observational_studies / Risk_factors_studies Limits: Adult / Aged / Female / Humans / Male Country/Region as subject: Europa Language: En Journal: Oncol Res Treat Year: 2023 Document type: Article Affiliation country: Germany Country of publication: Switzerland