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.
Cancer is a general term for a variety of diseases with common features. It originates when normal cells in the human body multiply in an uncontrolled manner, grow into healthy tissue and damage it. They become cancer cells. Cancer cells can migrate from their point of origin and form secondary growths, known as metastases.
Cancers can be traced to changes in the genotype. Several factors are known, which favour those changes, which can play a role in the emergence of cancer, for example:
- the natural process of ageing,
- lifestyle (e.g. smoking, consumption of alcohol, etc.)
- external factors (e.g. viruses, hazardous substances, tobacco smoke, UV radiation),
- inherited or genetic factors.
It is possible to influence some of these factors; conversely, others cannot be influenced. It is estimated that some third of cancers could be prevented by avoiding risk factors, such as tobacco or alcohol. The other diseases can be traced to factors, which cannot be influenced or which are unknown. Almost 90% of cancers appear in persons from the age of 50 years. In approximately 5 - 10% of the cases, it is presumed that the origin of the cancer is influenced by inherited characteristics. In families, thus affected cancer appears in every generation and frequently at a young age.
Cancer registration allows us to gain knowledge as to how cancers originate and how the disease progresses. The database from cancer registers is also used to observe the development of cancers at the population level.
Life expectancy in the Swiss population has almost doubled in the last 100 years. Because of the higher life expectancy, non-communicable diseases, which appear predominantly at a more advanced age (e.g. cancers, cardiovascular diseases or diabetes), have significantly increased in the last few decades.
Currently, in Switzerland, more than 40,000 new cases of cancer are diagnosed each year; almost 17,000 men and women die from cancer every year. This has made cancer the second most frequent cause of death in Switzerland, after cardiovascular diseases and it is responsible for about one quarter of all deaths. More than half the incidences of cancer are distributed over four types of cancer. In men, the most frequently diagnosed cancers are prostate, lung or colon cancer. In women, the most commonly diagnosed cancers are breast, lung or colorectal cancer. Because of demographic development, both the number of incidences and the number of deaths continue to increase. The Federal Statistical Office (FSO) estimates that deaths caused by cancer will increase by about one third in the next 20 years. At the same time, the number of "sufferers", i.e. the number of patients living with a cancer disease will also increase significantly. Currently, in Switzerland, this group already comprises some 370,000 people.
Cancer diseases in children and adolescents are rare. In Switzerland about 400 children and adolescents develop cancer each year. Children develop types of cancer different from those of adults. The most frequent cancers in children are leukaemia, brain tumours, and a range of rare tumours arising from immature embryonic tissue, which do not occur in adults. In the last few decades, the survival probability for children with cancer has significantly improved. Many children can be cured. However, these former patients have a high risk of developing later complications. Late complications are health problems occurring years after cancer, e.g. cardiovascular diseases, infertility, impaired hearing, further development of tumours or psychological problems. Since these young patients have many years of life before them, it is important that their health is regularly monitored in the long term.
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; 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). 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.
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.
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.
The data is collected in each competent cantonal or regional Cancer Registry (cancer incidence in adults from 20 years of age) or the Swiss Childhood Cancer Registry (cancer incidence in children and adolescents up to 20 years of age). The data transferred by the reporting doctor to the competent Cancer Registry are registered by the Cancer Registry after the lapse of a three month period of restriction (see also: Patients' rights in Cancer Registration). In order to ensure that the patient is allocated to the correct canton, the address is aligned with the aid of the cantonal and municipal Register of Inhabitants (verification of the principal residence). The competent cantonal Cancer Registry may also ask the reporting doctor for any missing information. The causes of death statistics from the Federal Statistical Office (FSO) and the medical statistics from the hospitals are used to check whether any incidences of cancer have not been reported so that these can be retrospectively collected.
The status in life of the registered cancer patients is checked by the Federal Central Compensation Office (CCO). Every year the cantonal Cancer Registry reports the registered incidences of cancer to the National Cancer Registry (NCR). Prior to the transfer of the data, to the National Cancer Registry the data are anonymised (they can no longer be traced to an individual person), since they are no longer required for analysis.
All patients (or persons authorised to represent them) must be informed both orally and in written form about their rights, the measures taken to protect their personal data and the purpose of cancer registration. The patient receives an information brochure and oral information.
All patients (or persons authorised to represent them) have the right to obtain confirmation as to whether and, if so, what information is recorded about them. An application can be submitted to the responsible cancer registry (right of access).
Furthermore, all patients (or persons authorised to represent them) have the right to object to the registration of their data (right of objection). In order to give patients (or the persons authorised to represent them) sufficient time to think about whether or not they agree to their data being registered, a waiting period has been defined by law. The waiting period is three months and begins on the day on which the patient (or the person entitled to represent the patient) has been informed about the cancer registration. During this time, the cancer registry in charge may not register any reported data.If a patient has lodged an objection with a cancer registry, the data of the person concerned will either not be registered at all or, in case the objection has been received after the waiting period, anonymised for statistical purposes. Anonymisation means that the data can no longer be assigned to any person. The period of validity of an objection is unlimited and also applies beyond death if the objection was not withdrawn by the patient at a later date.
Data protection is governed by the standards and laws applicable in Switzerland. The data collected are treated in the strictest confidence. The regulations for the storage and processing of the data are laid down in the Cancer Registration Act and in the Data Protection Act. These specify, for example, how the information is stored, who may use the information and when the information is erased. In addition, the employees at the Cancer Registries are subject to a duty of non-disclosure. Only they may process and register personal data (e.g. surnames, forenames, residential address). For example, health insurance companies, insurance companies and employers have no access to this information.
Publication of the Cancer Registry data – The National Cancer Statistics and Health Reporting on Cancer Incidence
National Cancer Statistics
National Cancer Statistic consists of a cancer monitoring system (available annually online) and the Cancer Report (published on a five-year cycle in printed form). In the context of the Cancer Registration Act, monitoring is understood to mean observing without assessing. Accordingly, cancer monitoring is the routine, standardised observation of data on cancer incidence in Switzerland.
The National Cancer Report serves to explain more fully the incidence of cases of cancer and for this reason, its content is based on the annual monitoring system. The purpose of the National Cancer Report is to allow scientists, clinical practitioners and politicians/the State, together with the public concerned, to examine the incidence and progression of cancers in terms of time and space. In the future, the report will additionally offer the possibility of using these observations for the diagnosis and selection of treatment options for care planning in different groups of patients.
The responsibility for the implementation of the National Statistic lies principally with the Federal Statistical Office (FSO) in collaboration with the National Cancer Registry (NCR) and the Swiss Childhood Cancer Registry.
Health reporting on cancer incidence
Health reporting on incidences of cancer will result in the future supplement of the National Cancer Statistic. In the context of the CRA health reporting on the incidence of cancer provides evaluative observations and makes any applicable recommendations.
Health reporting on the incidence of cancer responds to current health policy issues on the occurrence of cancers. As well as political decision-makers at various levels, various players in the provision of healthcare (clinical practitioners, scientific societies, researchers, etc.) are addressed in this report.
Differentiated analyses and descriptions of the health situation and the care of the defined population and patient groups provide important bases for decision-makers and the players referred to above. In the process, current scientific issues and perceptions in the interpretation of multi-factorial observations of the occurrence of cancers are taken into account.
The responsibility for implementing health reporting lies with the National Cancer Registry (NCR) and the Swiss Childhood Cancer Registry.
The contact information and links to the Internet sites for the cantonal and regional Cancer Registries and the Swiss Childhood Cancer Registry are available here
A long and a short simplified language version of the patient information are available as a pdf and as a link
Information page for patients (web link)
The information for patients is also available in Italian, French, Romansh, English and many other languages.
Brief information: National Strategy against Cancer 2017 -2020
The National Strategy against Cancer makes it possible for solutions to challenges in the care, support and follow-up care of cancer patients and for research into cancer in Switzerland to be compiled within a wide network of persons and organisations from healthcare, science, commerce, politics and society. The ultimate objective is to create a Cancer Community, encompassing the entire societal, economic, scientific and political discourse on cancer in Switzerland. The implementation of the National Strategy is coordinated by Oncosuisse. Oncosuisse is a society, which represents the common endeavours of several organisations in the battle against cancer.
Brief information: National Strategy for the Prevention of Non-communicable Diseases (NCD Strategy) 2017 - 2020 and National Strategy on Addiction 2017 - 2020
Both the NCD Strategy and the National Strategy on Addiction operate in the area of health promotion and prevention, as well as in health care. The National Strategy on Addiction operates in the area of health promotion and the prevention of addiction and also stresses the health care of dependent persons (early detection of addiction and therapy, together with damage limitation. Health promotion and prevention of non-communicable diseases are priorities of the NCD Strategy. The NCD Strategy focusses on cancer, diabetes, cardiovascular disease, chronic diseases of the respiratory system and musculo-skeletal diseases. It is also aimed at bolstering the position of prevention in basic medical care. The interfaces between the NCD Strategy and the National Strategy on Addiction are located in the implementation of the strategies of specific observation (design and implementation of the action plan). This applies in particular to specific issues in alcohol and tobacco prevention and generally to issues of health promotion and prevention.