Although the Cancer Registry Act (KRG) has only come into force on 01.01.2020, cancer registries in Switzerland have a history of more than 50 years. The first cancer registry was founded in Basel in 1969.

  • Short history of cancer registration in Switzerland

    Cancer registration for adults

    The record of adults suffering from cancer was and is organised at the cantonal level in Switzerland and patients are registered in cantonal or regional cancer registers. Every year the Cancer Registry collects all the new cases of cancer, which have been diagnosed in the population of the respective canton. Each registry has its own institutional structure and works closely with hospitals, pathological laboratories and other organisations, which can provide information on people living with cancer. The municipal Registers of Inhabitants are also consulted, in order to check regularly whether the patients are still alive or have died.

    The first cantonal Cancer Registry in Switzerland was founded in 1969 in Basel1. It was followed by other registries in the cantons of Geneva (1970), Waadt and Neuchâtel (1974), Zurich (1980), St. Gallen-Appenzell (1980), Wallis (1989), Graubünden (1989) and Glarus (1992), and Tessin (1996). Cancer registration began at the turn of the century in the canton of Jura (2005), the cantons of Central Switzerland (2010/2011), Zug (2011) and the cantons of Thurgau (2012), Aargau (2013) Bern (2014) and Solothurn (2019). In Schwyz and Schaffhausen, cancer registration began on 1st January 2020 with the entry into force of the Cancer Registration Act (CRA).

    1 The Basel Registry was founded in 1969, but electronic data were not available until 1981.

    Cancer registration for children and adolescents

    The Swiss Childhood Cancer Registry (SCCR) has been collecting incidences of cancer in children and adolescents throughout Switzerland since 1976. It was founded by Swiss paediatric oncologists, who are federated in the Swiss Paediatric Oncology Group (SPOG). The Cancer Registration Act (CRA), which came into force on 1st January 2020, provides for the management of a national Childhood Cancer Registry. As a bidding consortium comprising the Swiss Paediatric Oncology Group (SPOG) and the University of Bern, the SCCR has tendered to manage the Childhood Cancer Registry in accordance with the CRA. In summer 2018 the bidding consortium association (SPOG/University of Bern) took over this responsibility. As from 2020 the register section of the SCCR thus became the Swiss Childhood Cancer Registry for the Confederation and it collects data on cancer in children and adolescents of up to 19 years of age. The Swiss Childhood Cancer Registry is located at the Institute for Social and Preventative Medicine at the University of Bern. You can read a detailed account of the history of cancer registration for children and adolescents here.

    The National Institute for Cancer Epidemiology and Registration (NICER)

    In 1978 the Association of Swiss Cancer Registries (ASCR) was founded with the objective of standardising data collection, creating an inter-cantonal database and promoting epidemiological cancer research at the national level. In 2007 the National Institute for Cancer Epidemiology and Registration (NICER), located at the University of Zurich, was created from this association as an independent foundation. Since its foundation, the National Institute for Cancer Epidemiology and Registration (NICER) has coordinated cancer registration in Switzerland, collected and aggregated the data from the cantonal and regional registries, harmonised their work and ensured the data quality. A further objective of the foundation is the promotion of epidemiological cancer research in Switzerland. The National Cancer Registration Act also brings in the foundation of a National Cancer Registry (NCR) By order of the Federal Department of Home Affairs (FDHA) the National Institute for Cancer Epidemiology and Registration (NICER) is mandated with undertaking the responsibilities of the National Cancer Registry (NCR).

    Amendments by virtue of the Cancer Registration Act

    In March 2016 Parliament passed the federal law on the registration of incidences of cancer (Cancer Registration Act, CRA; Systematic Compilation of Federal Legislation 818.33) In April 2018 the Swiss Federal Council approved the associated statutory order (Cancer Registration Statutory Order; Systematic Compilation of Federal Legislation 818.331). The Act came into force on 1st January 2020.

    The Cancer Registration Act (CRA; Systematic Compilation of Federal Legislation 818.33) regulates the collection of reliable, diagnostically conclusive data on cancer incidence in Switzerland. It introduces several innovations, such as patient protection, the duty to report, insurance number (AHV/AHS  number) as personal identifier and standardisation of the data set, registration and data transfer. Since 1st January 2020 doctors, hospitals and private and public health institutes, who diagnose or treat cancer, must report defined information on specified types of cancer to the competent cancer registry. In addition, since 1st January 2020, every canton is obliged to organise a cancer registry or to attach itself to an existing registry.

    The potential in the Cancer Registration Act lies on the one hand in the improvement of the database for observing the development of cancer and other very prevalent or malignant, non-communicable diseases. On the other hand, these data serve to formulate, implement and verify prevention and screening programmes, evaluate the quality of care, diagnosis and treatment, as well as to support the planning of care and research.

  • The Cancer Registration Act (CRA) and the Statutory Order

    The Cancer Registration Act (CRA; Systematic Compilation of Federal Legislation 818.33) regulates the collection of reliable, diagnostically conclusive data on cancer incidence in Switzerland. The Act and its implementation is part of the Swiss Federal Council's Health Strategy 2020.

    In March 2016 Parliament passed the Cancer Registration Act (CRA; Systematic Compilation of Federal Legislation 818.33, German version)). On 11 April 2018 the Swiss Federal Council approved the associated statutory order (Cancer Registration Statutory Order; Systematic Compilation of Federal Legislation 818.331). The Act and the statutory order came into force on 1st January 2020. The Cancer Registration Act (CRA) introduces several innovations, such as patient protection, the duty to report, insurance number (AHV/AHS [old-age and survivors' insurance] number) as personal identifier and standardisation of the data set, registration and data transfer.

  • Meaning and purpose of the National Cancer Registry and the Cancer Registration Act (CRA)

    The statutory regulation of cancer incidence registration as from January 2020 has standardised the collection of data on cancer incidence. This improves the data quality for cancer incidence in Switzerland. The collection of reliable, diagnostically conclusive data is essential, in order to observe the development of the incidence of cancer over the years. The objective is to have a better understanding of cancers and to be better able to treat the conditions. The information collected can, for example, be used to investigate whether cancer incidence in Switzerland is increasing or reducing over time, or whether there are regional clusters. The knowledge gained contributes to the development of screening and prevention programmes, to guaranteeing optimum medical care and ought also to support research. By medical care, we mean medical services, which safeguard a person's health, for example, by providing optimum treatment. Follow-up care means that the patient continues to be under the care of a doctor, even after the treatment of cancer, for example, through what are known as follow-up examinations.

  • The responsibilities of the National Cancer Registry (NCR) and the Swiss Childhood Cancer Registry (SCCR) and the cantonal Cancer Registry

    The National Cancer Registry (NCR) is the national authority, where the data on all the incidences of cancer occurring in Switzerland are collated. It monitors the quality of the data and reports this back to the Cancer Registries. The National Cancer Registry and the Swiss Childhood Cancer Registry are the bodies responsible for national health reporting on cancer incidence. Like the Swiss Childhood Cancer Registry, the National Cancer Registry transfers the data needed by the National Cancer Statistic to the Federal Statistical Office (FSO). By order of the Federal Department of Home Affairs (FDHA) the National Institute for Cancer Epidemiology and Registration (NICER) is mandated with undertaking the responsibilities of the National Cancer Registry (NCR).

    The Swiss Childhood Cancer Registry (CCR) is the national authority for all issues and analyses on the topic of cancer in children and adolescents. It collects information from all over Switzerland on all children and adolescents up to the age of 19 years suffering from cancer. Incidences and data on the progression of the disease and treatment processes are registered. Once per year, the Swiss Childhood Cancer Registry transfers a proportion of the data collected to the cantonal Cancer Registry. Together with the National Cancer Registry, the Swiss Childhood Cancer Registry is responsible for health reporting on cancer incidence. By order of the Federal Department of Home Affairs (FDHA) the bidding consortium SPOG/University of Bern is mandated with undertaking this responsibility.

    The cantonal Cancer Registries collect data on the incidence of cancers and their treatment in adults (from 20 years of age), who reside in the canton of the respective Cancer Registry. Once annually, the cantonal Cancer Registries transfer to the National Cancer Registry the incidence of cancers registered in Switzerland.

  • Scope of data collection for the purposes of cancer registration

    Standardised basic data are registered on every incidence of cancer. These include the type and stage of cancer, information on initial treatment and on any appearance of recurrence or metastases. This makes possible the nationwide, complete, exhaustive collection of all incidences of cancer as well as facilitating observation of the progression of the disease.

    Breast cancer, colon cancer and prostate cancer together constitute more than half of all the incidences of cancer in Switzerland. For this reason, on these three types of cancer, additional data on genetic predisposition, as well as on pre-existing and concomitant diseases, are collected. In addition to the basic data for all incidences of cancer in children and adolescents other information is also collected, for example on genetic predisposition, on pre-existing and concomitant diseases, as well as detailed information on the overall progression of the disease, its treatment and follow-up treatment.

    In addition, the following data on the person are collected in the Cancer Registry: surname, forenames, insurance number (AHV/AHS [old-age and survivors' insurance] number), residential address and municipality number, date and place of birth, sex, civil status, nationality. This personal information is necessary for accurate registration in the Cancer Registries.

    The contact data of the person under the duty to report are registered by the Cancer Registry. Doctors, hospitals, pathology institutes and medical laboratories, who diagnose and/or treat cancer patients are under a duty to report. This facilitates enquiries, and also makes possible institute-specific analyses. Institute-specific analyses may be implemented and disclosed only if the institution/person has given consent to the processing and disclosure.