Since 2020 – The Swiss Childhood Cancer Registry Today
Introduction of the Cancer Registration Act (CRA)
Since January 2020 (when the Cancer Registration Act entered into force), the Swiss Childhood Cancer Registry (ChCR) has been operated by the University of Bern’s Institute of Social and Preventive Medicine (ISPM) on behalf of the Federal Office of Public Health. Initially, it was jointly managed by the Swiss Paediatric Oncology Group (SPOG) and the University of Bern at the ISPM; since January 2024, it has been under the sole responsibility of the University. The Act mandates cancer registration, and reporting by healthcare professionals and institutions that diagnose or treat cancer is compulsory. The ChCR is a population-based registry that records all cancers diagnosed in persons under 20 years of age who reside in Switzerland.
Rare tumours
Childhood cancers are rare tumours. Their assessment requires specialised expertise as well as national and international collaboration in the field of childhood cancer and cancer registration. For this reason, childhood cancers are registered at the national level, whereas cancers in adults are registered at the cantonal level. Most children and adolescents with cancer are treated within the framework of international clinical treatment studies to ensure access to the best available therapy according to the latest scientific knowledge.
1976–2019 – Origins on a voluntary basis
The significance of historical development
A voluntary initiative by the SPOG gave rise to an indispensable tool: today, the Swiss Childhood Cancer Registry plays a central role in the surveillance, research and optimisation of cancer treatment for young patients.
The ChCR originated from the former Swiss Childhood Cancer Registry (SCCR), which was established in 1976 by the SPOG on a voluntary basis. The SPOG is the association of the nine Swiss paediatric oncology centres where children and adolescents with cancer are treated. Initially, only participants in clinical treatment studies were registered, but from 1981 onwards, all patients treated in Switzerland were included.
Since 1992, long-term follow-up and late effects in cured patients have also been recorded by systematically documenting treatment modifications and health status during clinical follow-up examinations and entering this information into the registry. Despite the absence of mandatory reporting, registration of children up to 15 years of age was almost complete from 1990 onwards, making it the only cancer registry with national coverage in Switzerland.
Population-based Childhood Cancer Registry
Since 2004, the Swiss Childhood Cancer Registry (SCCR) has been jointly managed by the SPOG and the Paediatric Epidemiology Research Group at the ISPM. Subsequently, the registry, which had previously been primarily clinical, was transformed into a population-based registry in order to include all patients in Switzerland. The SCCR subsequently expanded its data collection.
Comprehensive data collection
In addition to data reporting by the nine SPOG clinics (Aarau, Basel, Bellinzona, Bern, Geneva, Lausanne, Lucerne, St. Gallen and Zurich), systematic data collection from other sources was introduced in 2007 (e.g. from non-SPOG clinics, pathology laboratories, or through data exchange with the Cantonal Cancer Registries (CCRs)). These new aspects of data collection were approved in 2004 through a special authorisation and in 2007 through a general cancer registry authorisation granted by the Expert Commission on Professional Secrecy in Medical Research of the Federal Office of Public Health. Following the introduction of the new Human Research Act, this authorisation was confirmed in 2014 by the Cantonal Ethics Committee of Bern. This also authorised linkage with routine data, for example from birth and mortality statistics, as well as the distribution of questionnaires to patients or their parents.