The Federal Act on the Registration of Cancerous Diseases (Cancer Registration Act- CSA; SR 818.33) comes into force on 1 January 2020. This Federal Act requires cancer to be registered in Switzerland. The Swiss Childhood Cancer Registry (SCCR) submitted a tender through a bidding consortium comprising the Swiss Paediatric Oncology Group (SPOG) and Bern University to the Swiss Government for the federal task of managing the Childhood Cancer Registry in accordance with the CRA. The Federal Government conferred this federal task on the bidding consortium (SPOG/ Bern University) in the summer of 2018. From 2020, the registry part of the SCCR will therefore become the Childhood Cancer Registry (ChCR) of the Federal Government, with the task of recording cancer in children and adolescents under 20 throughout Switzerland.
The Swiss Childhood Cancer Registry (SCCR) was founded in 1976 by the Swiss Paediatric Oncology Group (SPOG). In the early years, data were recorded only from patients taking part in clinical trials, but from 1981 patients not taking part in trials were also registered systematically. In the early 1990s the paediatric oncology units started to document the long-term course of cancer, systematically recording changes in therapy and the patients’ state of health from clinical follow-up investigations (up to hospital discharge) and documenting them in the register. From 2004 the SCCR was managed jointly by the SPOG and the paediatric epidemiology research group in the Institute of Social and Preventive Medicine at Bern University (www.ispm.unibe.ch). The primarily clinical register was subsequently turned into a population-based register so that all patients in Switzerland could be included. This was the point at which the SCCR expanded its data-recording activities. The data reported by the nine SPOG hospitals (Aarau, Basel, Bellinzona, Bern, Geneva, Lausanne, Lucerne, St. Gallen and Zurich) were supplemented from 2007 by data recorded systematically by other sources (e.g. non-SPOG hospitals, pathology laboratories or via data exchange with the cantonal cancer registries). This new aspect of data collection was approved with a special permit in 2004 and a general licence for cancer registries issued in 2007 by a committee of experts responsible for professional secrecy at the Federal Office of Public Health. This license was confirmed by the cantonal ethics committee in Bern in 2014 following the implementation of the new Human Research Act. It also permitted cancer data to be linked with routine data, e.g. from birth and death statistics, and questionnaires to be sent to patients or their parents.