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. 2013 Mar 6:5:45-56.
doi: 10.2147/CLEP.S41835. Print 2013.

Population-based Aarhus Sarcoma Registry: validity, completeness of registration, and incidence of bone and soft tissue sarcomas in western Denmark

Katja Maretty-Nielsen  1 , Ninna Aggerholm-Pedersen, Johnny Keller, Akmal Safwat, Steen Baerentzen, Alma B Pedersen
Affiliations

Population-based Aarhus Sarcoma Registry: validity, completeness of registration, and incidence of bone and soft tissue sarcomas in western Denmark

Katja Maretty-Nielsen et al. Clin Epidemiol. .

Abstract

Background: The aim of the present study was to validate the data in the Aarhus Sarcoma Registry (ASR), to determine if this registry is population-based for western Denmark, and to examine the incidence of sarcomas using validated, population-based registry data.

Methods: This study was based on patients with bone and soft tissue sarcoma treated at the Sarcoma Centre of Aarhus University Hospital between January 1, 1979 and December 31, 2008. The validation process included a review of all medical files by two researchers using a standardized form. The Danish Cancer Registry was used as a reference to assess the completeness of registration of patients in the ASR. Crude and World Health Organization age-standardized incidence, as well as age-, gender-, and year-specific incidences were estimated.

Results: The validation process added 385 to the 1442 patients who were registered in the ASR. Before validation, on average, 70.5% of the data for the variables was correct. Validation improved the average completeness of the registered variables from 83.7% to 99.3%. The 1827 patients in the ASR after validation include 85.3% of the patients registered in the Danish Cancer Registry. The overall World Health Organization age-standardized incidence of sarcoma in the trunk or extremities in western Denmark in the period 1979-2008 was 2.2 per 100,000, being 0.8 for bone sarcomas and 1.4 for soft tissue sarcomas.

Conclusion: The validation process significantly improved the completeness of the variables and the quality of the ASR data. ASR is now a valuable population-based tool for epidemiological research and quality improvement in the treatment of sarcoma. It is our recommendation that documented validation of registries should be a prerequisite for publishing studies derived from them.

Keywords: cancer registry; clinical databases; completeness; incidence; sarcoma; validity.

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Figures

Figure 1
Figure 1
Flow chart for patients registered in the ASR and DCR in the period 1979–2008, with number of patients (N), reasons for exclusion, and distribution across registries. Includes patients only registered in the ASR (ASR/DCR), patients only registered in the DCR (DCR/ASR), and patients registered in both registries (ASR∩DCR). Notes: *Based on the WHO ICD-03 codes. Non-sarcoma pathology includes benign, borderline and some malignant tumors (Appendix A). This population is not complete. Abbreviations: ASR, Aarhus Sarcoma Registry; DCR, Danish Cancer Registry; WHO, World Health Organization.
Figure 2
Figure 2
Crude IR per 100,000 inhabitants and World Health Organization age-standardized IRR, with 95% CI and P values, for bone and soft tissue sarcoma in the Aarhus Sarcoma Registry from 1979 to 2008 according to age (years) and gender (n = 1827). Abbreviations: CI, confidence intervals; IR, incidence rate; IRR, incidence rate ratios.
Figure 3
Figure 3
World Health Organization age-standardized IR per 100,000 inhabitants and IRR, with 95% CI and P values for overall, bone, and soft tissue sarcoma in the Aarhus Sarcoma Registry from 1979 to 2008 (n = 1827). Abbreviations: CI, confidence intervals; IR, incidence rate; IRR, incidence rate ratios.
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