Completeness and timeliness: Cancer registries could/should improve their performance

R. Zanetti, I. Schmidtmann, L. Sacchetto, F. Binder-Foucard, A. Bordoni, D. Coza, S. Ferretti, J. Galceran, A. Gavin, N. Larranaga, D. Robinson, L. Tryggvadottir, E. Van Eycken, V. Zadnik, J.W.W. Coebergh, S. Rosso

Research output: Contribution to journalArticlepeer-review

Abstract

Cancer registries must provide complete and reliable incidence information with the shortest possible delay for use in studies such as comparability, clustering, cancer in the elderly and adequacy of cancer surveillance. Methods of varying complexity are available to registries for monitoring completeness and timeliness. We wished to know which methods are currently in use among cancer registries, and to compare the results of our findings to those of a survey carried out in 2006.

Methods
In the framework of the EUROCOURSE project, and to prepare cancer registries for participation in the ERA-net scheme, we launched a survey on the methods used to assess completeness, and also on the timeliness and methods of dissemination of results by registries. We sent the questionnaire to all general registries (GCRs) and specialised registries (SCRs) active in Europe and within the European Network of Cancer Registries (ENCR).

Results
With a response rate of 66% among GCRs and 59% among SCRs, we obtained data for analysis from 116 registries with a population coverage of ∼280 million. The most common methods used were comparison of trends (79%) and mortality/incidence ratios (more than 60%). More complex methods were used less commonly: capture–recapture by 30%, flow method by 18% and death certificate notification (DCN) methods with the Ajiki formula by 9%.

The median latency for completion of ascertainment of incidence was 18 months. Additional time required for dissemination was of the order of 3–6 months, depending on the method: print or electronic. One fifth (21%) did not publish results for their own registry but only as a contribution to larger national or international data repositories and publications; this introduced a further delay in the availability of data.

Conclusions
Cancer registries should improve the practice of measuring their completeness regularly and should move from traditional to more quantitative methods. This could also have implications in the timeliness of data publication.
Original languageEnglish
Pages (from-to)1091-1098
Number of pages8
JournalEuropean Journal of Cancer
Volume51
Issue number9
Early online date03 Jan 2014
DOIs
Publication statusPublished - Jun 2015

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