Completeness of cancer registration and diagnostic accuracy

Summary

The research project aims to validate and complete records of the SCCR against independent sources of data. In collaboration with the Swiss Paediatric Oncology Group (SPOG) and the Association of Swiss Cancer Registries (ASRT).

Study Description

Background: Childhood cancer is the second most important cause of death in children in Switzerland and accounts, because of the young age at diagnosis, for a significant proportion of disability-adjusted life years lost. Also, recent international data suggest that incidence of childhood cancer might have increased. Research on rare diseases such as childhood cancer is only possible if all cases are diagnosed and registered centrally in a standardised way, to enable international collaborative studies. Switzerland, together with the UK and Germany and a few other countries, is in the exceptional position to have such a database, the Swiss Childhood Cancer Registry (SCCR). However, as the SCCR was originally set up as a clinical registry, completeness and accuracy of the information have to be validated against independent population-based data sources.

Objectives: The research project aims to validate and complete records of the SCCR against independent sources of data, including cantonal registries of the Association of Swiss Cancer Registries (ASRT), and to develop a standardised protocol for regular future cross-validation between these databases.

Methods: A deterministic record linkage procedure (SALI: Software for automated record linkage in Italy) will be used to link the SCCR database with records from the ASRT for all children diagnosed with cancer in Switzerland below the age of 16 years. Names and date of birth will be used for record linkage. For patients with imperfect matches, a chart review in the central archive of the Swiss Paediatric Oncology Group (SPOG) and in participating clinics will be performed to identify data entry errors. With the linked datasets, we will compare: a) completeness of cancer registration in the different databases; b) diagnostic coding (ICD-O3); and c) secondary tumours in survivors of childhood cancer. A standard procedure will be developed to facilitate future cross-validation of data between the SCCR and the ASRT databases.

Rationale and significance: A complete and valid database is the fundamental basis of epidemiological research on cancer. The success of this project will enable high quality epidemiological research on the incidence and survival of childhood cancer in Switzerland, and provide the basis for international collaboration with other childhood cancer registries.

Publications

Original peer-reviewed papers

Adam M, von der Weid NX, Michel G, Zwahlen M, Lutz JM, Probst-Hensch NM, Niggli F, Kuehni CE for the Swiss Paediatric Oncology Group (SPOG) and for the Swiss Association of Cancer Registries (ASRT).
Access to specialized pediatric cancer care in Switzerland.
Pediatric Blood & Cancer 2010;54:721-727.

Michel G, von der Weid NX, Zwahlen M, Adam M, Rehholz CE, Kuehni CE.
The Swiss Childhood Cancer Registry: Rationale, organisation years 2001-2005.
Swiss Medical Weekly 2007;137:502-509.

Published abstracts

Adam M, Von Der Weid NX, Michel G, Zwahlen M, Ess S, Kuehni C.
Which childhood cancer patients fail to access specialised paediatric oncology care?
Swiss Medical Weekly 2008;138:39S-39S.

Study team

- Adam, Martin (PM). Institute of Social and Preventive Medicine, University of Berne
- Kuehni, Claudia (PL). Institute of Social and Preventive Medicine, University of Berne
- Zwahlen, Marcel. Institute of Social and Preventive Medicine, University of Berne
- Michel, Gisela. Institute of Social and Preventive Medicine, University of Berne
- Von der Weid, Nicolas. Pediatric Oncology, CHUV Lausanne

Applicants

- Egger, Matthias. Institute of Social and Preventive Medicine, University of Berne
- Kuehni, Claudia. Institute of Social and Preventive Medicine, University of Berne
- Ess, Silvia. Cantonal Cancer Registry, St. Gallen
- Von der Weid, Nicolas. Pediatric Oncology, CHUV Lausanne

Partner

- Swiss Paediatric Oncology Group (SPOG)
- The Swiss Association of Cancer Registries (ASRT)
- National Institute for Cancer Epidemiology and Registration (NICER)

Funding

Bernese Cancer league (Bernische Krebsliga).

Project duration

06.2006 - 08.2007

State

Completed

© ISPM - University of Bern 2016