Data sources
In Switzerland, new cases of cancer are registered at cantonal level in cancer registries (CCR), which record all new cases of cancer diagnosed among residents of their canton every year. Data from the registries are then collated and checked by the National Agency for Cancer Registration (NACR) before being forwarded to the FSO.
Coding
Data are recorded on the basis of the International Classification of Diseases for Oncology (ICD-O-3) and the corresponding ICD 10 codes are assigned to each case so that the statistics correspond to international standards.
All cases of primary malignant tumours are included in the statistics, with the exception of non-melanotic skin cancers (C00-43, C45-97, ICD-10). Primary tumours are defined according to the rules of the International Agency for Research on Cancer (IARC) / International Association of Cancer Registries (IACR) / European Network of Cancer Registries (ENCR): http://www.iacr.com.fr/images/doc/MPrules_july2004.pdf.
Cantonal registration and national incidence estimates
Before the Federal Act and Ordinance on the Registration of Cancerous Diseases (CRA and CRO) came into force in 2020, legal provisions governing tumour registration varied considerably between cantons, occasionally limiting acces to data. Registers have been set up gradually since 1970 (see map) covering the whole of French-speaking Switzerland and Ticino since 2006, and all German-speaking cantons since 2020. The entry into force of the Act and Ordinance has led to harmonisation of the legislation and the data collected, as well as to changes in the data collection processes.
Two exceptions should be noted in the coverage rates;
- The registry for the two cantons of Basel (Basel-Stadt: BS and Basel-Land: BL) has only included the district of Laufen (BL) since 2013, which until 1994 had belonged to the canton of Bern. This district's population (approximately 7% of the population of the canton of Basel-Landschaft) was deducted from the cantonal population to calculate incidence rates.
- Data from 2018 and 2019 for the canton of Vaud and from 2020 for the canton of Aargau have as of yet not been included in the statistical analysis.
Where data collection is not complete throughout the country, the data collected (observed data) has to be extrapolated to the whole of Switzerland in order to obtain national estimates. These estimates are important for tracking changes in incidence over time and making international comparisons. The estimates are obtained by applying an extrapolation weight (population with registration/total population) to the observed numbers to offset the lack of registration in a given geographical area or year/period. The weighting is calculated for different strata of variables known to be associated with a cancer risk, such as age, sex and language region. In Switzerland, the prevalence of putative risk factors, such as smoking or dietary exposure, vary between language regions. Statistical Methods for Cancer Reporting in Switzerland, Version 1.0.
Data quality
Data on cancer incidence are usually compared with data on cancer mortality, allowing missing registrations to be detected. In some registries, these comparisons have not been fully and systematically conducted for all the years covered by the registry. This was the case for the Basel-Stadt/Basel-Landschaft registry for 1981-2001 and 2010-2012. For the canton of Zurich, the Zurich/Zug registry confirmed that comparisons have been made systematically since 1997; it was not possible to determine whether complete comparisons were made for the years 1980-1996.
The quality of data from a cancer registry depends, among other things, on the completeness of the data collected, i.e. the number of cases registered in relation to the total number of new cases in the population covered by the registry. Completeness should be close to 100% to enable the comparison of incidence rates (between different periods or geographic areas) to conclude that there are real differences in the risk of developing cancer. A publication* based on methods for assessing completeness appeared in 2017. Furthermore, the IARC publishes other quality indicators for certain Swiss registries**.
The NACR publishes eight indicators as part of its standard work to assess data quality***: 1) number of observed and expected cases; 2) the mortality/incidence ratio; 3) proportion of cases initially identified based on information on the cause of death certificate ( Death Certificate Notification, DCN), 4) proportion of cases registered based on information on the cause of death certificate only (death certificate only, DCO); 5) proportion of cases with histological examination; 6) Proportion of cases without information on cancer stage; 7) Heterogeneity of cancer registries in the proportion of cases registered with DCO; 8) Heterogeneity of cancer registries in the proportion of cases that were histologically examined..
*Lorez M., Bordoni A., Bouchardy C. et al. Evaluation of completeness of case ascertainment in Swiss cancer registration. Eur J Cancer Prev.2017; 00: 000-000
**Cancer incidence in five continents, Vol IX. Lyon: IARC/WHO, 2007. IARC/WHO Scientific Publications No. 160
*** "Annual Data Quality Reports (aDQR)", "Swiss annual Data Quality Report (aDQR)", published on the website of NACR under Downloads and Links, Statistics and reports, Data quality reports: https://www.nkrs.ch/en/downloads