Cantonal cancer registries
The registration of adults with cancer has been and is organised cantonally in Switzerland and occurs in 13 cancer registries. Each year, the cancer registries record all new cancer cases diagnosed in the respective cantonal population. Each registry has its own institutional structure and works closely with hospitals, physicians, pathological laboratories and other institutions that have information on cancer (e.g. death statistics from the Federal Statistical Office). The resident registries of cantons are also consulted to regularly check whether patients are still alive or have died.
Switzerland’s first cantonal cancer registry was founded in Basel in 1969 (but electronic data is only available from 1981 on). After that, additional registries were established in the Cantons of Geneva (1970), Vaud and Neuchâtel (1974), Zurich (1980), St. Gallen and the two Cantons of Appenzell (1980), Wallis (1989), Graubünden (1989), Glarus (1992) and Ticino (1996). After the turn of the millennium, cancer registration began 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). Schwyz and Schaffhausen joined the cancer registration system on 1 January 2020, with the entry into force of the Cancer Registration Act (CRA).
Cancer registration for children and adolescents
The Swiss Childhood Cancer Registry has been recording cancer in children and adolescents throughout Switzerland since 1976. It was founded by the Swiss Paediatric Oncology Group (SPOG). The Cancer Registration Act (CRA), which came into force on 1 January 2020, stipulates that a National Childhood Cancer Registry must be maintained. In the summer of 2018, the federal government entrusted this task to the group consortium (SPOG/University of Bern). In 2020, the registry division of the SCCR thus became the federal government’s Childhood Cancer Registry (ChCR), which records cancer in children and adolescents up to and including 20 years of age throughout Switzerland. The Childhood Cancer Registry is located at the Institute for Social and Preventive Medicine of the University of Bern (ISPM). A detailed description of the history of cancer registration of children and adolescents can be found on the website of the Childhood Cancer Registry.
The National Agency for Cancer Registration
In 1978, the Swiss Cancer Registries Network (VSKR) was founded with the aim of standardising data collection, creating an intercantonal database and promoting epidemiological cancer research at the national level. In 2007, the Zurich-based National Institute for Cancer Epidemiology and Registration (NICER) emerged from this network as an independent foundation. Since its foundation, NICER has been coordinating cancer registration in Switzerland, collecting the data of cantonal cancer registries, harmonising their work, ensuring data quality and carrying out evaluations at a national level. Another goal of the foundation is to promote epidemiological cancer research in Switzerland. The national Cancer Registration Act (CRA) was accompanied by the establishment of the National Agency for Cancer Registration (NACR). By order of the Federal Department of Home Affairs (FDHA), the National Institute for Cancer Epidemiology and Registration (NICER) has been mandated to carry out the tasks of the National Agency for Cancer Registration (NACR) since 2018.
Changes made by the Cancer Registration Act
In March 2016, parliament passed the federal act on the registration of cancer (Cancer Registration Act, CRA). In April 2018, the Federal Council adopted the corresponding ordinance (CRO Cancer Registration Ordinance). The law came into force on 1 January 2020.
The Cancer Registration Act (CRA) regulates the collection of meaningful and reliable data on cancer, pre-cancerous tumours and certain benign tumours in Switzerland. It introduces some innovations such as the regulation of patient protection, a reporting obligation, the use of the OASI number as a personal identifier, as well as the standardisation of the dataset, registration and data transmission.
Since 1 January 2020, physicians, hospitals and private and public health institutions that diagnose or treat cancer must report defined information on specified types of cancer to the responsible cantonal cancer registry or to the Childhood Cancer Registry. Since 1 January 2020, each canton has been obliged to maintain a cancer registry or to join an existing registry.
The purpose of the Cancer Registration Act is to improve the basis of the data for monitoring the development of cancer. The collected data is also used to develop, implement and review prevention and screening programs, to evaluate the quality of care, diagnosis and treatment, and to support care planning and research.