FAQ – Frequently asked questions

The verbal and written notification has the goal to ensure that you, as patient, understand what the registration of your tumour diagnosis means, and that you have the option to refuse this registration. It should also ensure that you, as patient, have the opportunity to ask questions.

The Cancer Registration Act stipulates that the recorded information should ensure the collection of exhaustive nationwide data necessary for monitoring of cancer at a population level. This goal can be reached only by means of a statutory reporting duty for cancer diagnoses for doctors, hospitals, laboratories and other private or public institutions of the healthcare system.

The cancer registries follow strict rules in storing and processing your information. These rules are set out in the Cancer Registration Act and the Data Protection Act. The rules define the way information is stored, who may use it and when it may be deleted. Employees with access to the cancer registries are subject to confidentiality obligations. Only they may process and record your personal information (eg, first name, last name, address). Health insurers and other insurance providers, employers or your physician have no access to this information.

The objection must be in writing, but you may draft a written notification yourself. Please note that the objection must contain the following: first name, family name, address, date of birth, insurance number (AHVN13), date, and signature. You can also contact one of the cantonal cancer registries or the Childhood Cancer Registry, who will send you a objection form by mail. The contact information for the cancer registries is found at: https://www.nacr.ch/en/cancerregistries.

You may cancel the objection any time. Contact one of the cantonal cancer registries or the Childhood Cancer Registry.  The contact information for the cancer registries is found at: https://www.nacr.ch/en/cancerregistries.

The independent physician has the responsibility for the accurate and timely reporting. If you are diagnosed or treated in an institution, the management of that institution (eg, hospital) is responsible. Also, all laboratories involved in your diagnosis must report your data; the management of these facilities must ensure this. If you are in agreement with the reporting and registration, you as patient are not required to do anything.

You have the right to know at any moment what is stored in the cancer registry on your cancer and your person. You need only to submit a request to the responsible cancer registry. The cantonal cancer registry is responsible for patients who were 20 or older at the time of diagnosis (canton of residence at the time of diagnosis). The Childhood Cancer Registry is responsible for patients who were younger than 20 at the time of diagnosis. Please contact the responsible cancer registry. The contact information for the cancer registries can be found at: https://www.nacr.ch/en/cancerregistries.

The National Agency for Cancer Registration (NACR), the Childhood Cancer Registry (CCR) and the Federal Statistical Office (FSO) process the information collected nationwide and regularly inform the Swiss population, doctors, politicians and researchers about cancer in Switzerland. The data are used, among others, for the National cancer statistic and the Reporting on cancer-related health status.

In principle, the person or organisation where the data originates for a patient is responsible for reporting this. The independently practising doctor, or the management of the employing institution in case of a doctor practicing as an employee, has the responsibility for a correct and timely report. The reporting of the data to the cantonal cancer registry or the Childhood Cancer Registry can be delegated to another person, but the responsibility cannot be transferred.

The recording of information pursuant to CRA has the goal to ensure that the data necessary for population-based monitoring of cancer are collected in a nationwide, complete and comprehensive fashion. This goal can be reached only through the introduction of a statutory duty to report for doctors, hospitals, laboratories and other private and public institutions of the healthcare system.

The data must be reported by persons or institutions with duty to report within four weeks after collection to the Childhood Cancer Registry or the cantonal cancer registry.

No. No active consent is necessary for the registration. Only a statement of refusal has to be signed by the patient. In this case the registration is actively cancelled.

The oncological diseases under duty to report are listed in the Attachment 1 of the Cancer Registration Ordinance (CRO). There are differences between adult patients, and children and adolescents. Only data on confirmed diagnoses are under the duty to report (suspected cases are not included).

Data on diagnosis and initial treatment, in addition to the personal data necessary for the correct data assignment, are to be reported for all patients (adults, children and adolescents). These data are designated in the Cancer Registration Act and the Ordinance as basic data. Also, so-called additional data are to be reported. For children and adolescents up to and including the age of 19, these include data on the entire course of disease and treatment, as well as treatment results and information on follow-up studies. For breast, intestinal-, or prostate cancer, additional data consist of familia or personal predisposing factors, and pre-existing and accompanying diseases.

Please note: the report of the doctor that establishes the initial diagnosis must contain the date of the notification of the patient. Also, whenever possible/available, the AHVN13 must be provided for the unambiguous identification of the patient. 

For patients younger than 20 years of age at the time of diagnosis, the report needs to go the Childhood Cancer Registry, and for patients aged 20 or older, to the appropriate cantonal cancer registry. The report to the childhood cancer registry is not affected by the place of residence at the time of diagnosis. For adults, the data need to be addressed to the cantonal cancer registry of the canton of residence of the patient. A list of the cantonal cancer registries can be found here. 

The Cancer Registration Act (CRA) is designed to minimise the workload for persons or institutions with duty to report. For instance, you may use reports that you create as part of routine medical documentation (see also art.8,, paragraph 2, CRO) for data reporting to the cancer registry. The cancer registry will do the work of selecting and coding the relevant information. The report can be transmitted for example by encrypted e-mail (HIN-mail).

The medical professional who informs the patient about the diagnosis is also responsible for doing so regarding cancer registration. Ideally a person known to the patient or who shares a trust-based relationship with the patient will provide the notification. The notification about the cancer registration must occur orally and in writing. The NACR offers brochures in 14 languages for the written notification. Brochures in the three Swiss national languages German, French, and Italian, as well as in English, are available for order. Versions in the other languages can be downloaded as PDF files. The brochures in German, French, Italian, and English can be ordered on this internet page: https://www.migesplus.ch/en/publications/information-about-the-registration-of-cancer.  

The doctor who informs the patient or their legal representative (e.g. parents) of the diagnosis must inform them verbally about the reporting of data to the relevant cancer registry and their right to object to the registration of data at any time and without giving reasons. In addition, the patient information brochure must be provided in writing. The doctor must document that the patient has been informed, including the date.

The healthcare professional has the latitude to decide on the opportune time for notification. The notification should occur however as close as possible in time after the diagnosis is disclosed. The notification must be in oral and in written form. The NACR offers brochures in 14 languages for the written notification.

The written (brochures with patient information can be obtained here) and oral notification have the goal of ensuring that patients understand what the significance of the registration of their tumour diagnosis is, and that they have the option to refuse the registration. It should also be ensured that patients have the opportunity to ask questions.

A patient must submit a refusal in writing to a cantonal cancer registry or to the Childhood Cancer Registry. The refusal must contain the following information on the patient objecting registration: first name, family name, address, date of birth, AHV number, date, and signature. The mere statement of the patient to the doctor that the registration is not desired is NOT sufficient. Forms for filing an objection are available on the webpages of the cancer registries (https://nacr.ch/en/cancerregistries).

The doctor with duty to report must observe the obligation of confidentiality that governs the doctor-patient relationship. The doctor must treat all medical information in a confidential manner. As a rule, the doctor may not disclose information to third parties without consent (Art.321, Swiss Criminal Code, StGB). A doctor may disclose patient data in the following circumstances: when they have obtained the consent of the patient, when their overseeing agency releases them from the professional confidentiality, or when the data disclosure is explicitly stipulated in a statute. The latter circumstance is created by the Cancer Registration Act (CRA) and the Cancer Registration Ordinance, (CRO). The documentation forwarded to the responsible cancer registry may only contain information related to the cancer (Art. 8, paragraph 2, CRO). 

• Cancer registries use documents received for reporting to register personal, diagnostic and treatment data. Should new data be available, the registered information is updated. 
• Personally identifiable information is verified as to its accuracy and stored separately from medical data. Date and cause of death are matched with data from other official sources (i.e. Central Compensation Office and Federal Statistical Office). 
• Once a year the data is sent in anonymised form to the National Agency for Cancer Registration, and then forwarded to the Federal Statistical Office. The Federal Statistical Office, the National Agency for Cancer Registration and the Childhood Cancer Registry are responsible for cancer monitoring and health reporting, and publish the data in the form of aggregated statistics. 
• Furthermore, data can, in anonymised form, be used for diagnostic and treatment quality assessment, for planning and evaluating prevention and early detection strategies, as well as for research purposes. 

Three different categories of data exist that need to be considered by the cancer registry in case of an objection, leading to the following three scenarios: 

a) The original data transmitted to the cancer registry by persons or institutions under obligation to report, or data that might be in the future, is deleted immediately in every case. 

b) In case information is already present in the data bank of the cancer registry at the time of objection, this data is anonymised. No subsequent data is registered after the objection. 

c) The letter or form that was sent to the cancer registry to submit the objection is deleted after sending a confirmation to the person that submitted the request. Age, gender and place of residence as well as any explanation for the objection are forwarded to the NACR for statistical purposes. 

• Data is primarily collected for the observation of trends in cancer, for elaborating prevention and early detection strategies, and for assessing the quality of care, diagnosis and treatment. Basic data are evaluated by the Federal Statistical Office in collaboration with the National Agency for Cancer Registration and the Childhood Cancer Registry. Results appear in the form of annual cancer monitoring as well as a cancer report published every 5 years. Monitoring includes the most important epidemiological indicators such as prevalence, incidence, mortality and survival rates, thereby reflecting the cancer situation nationally. The cancer report is a comprehensive document and contains more detailed information as well as explanations. 
• Moreover, cantonal data can provide insights for cantonal healthcare planning. 
• For questions related to public health additional data are analysed which are used for producing health reports. Additional data on cancer in adults will focus on multimorbidity in upcoming years. These data will initially need to be reported exclusively for the three most frequent locations, namely breast, prostate and bowel.  
• For children and adolescents a broader range of additional data will be collected than for adults. These data serve to accurately describe the entire disease course and therapeutic interventions, including the outcomes of treatments and follow-up investigations. 

Data in anonymised or aggregated form can be made available to third parties for the purposes of research. Research projects are regulated by the Human Research Act and require, if data is not used in anonymised or aggregated form, informed consent from patients in addition to approval from the relevant ethics committee. Exceptionally, the relevant ethics committee can authorise transmission of non-anonymised data. Those data intended for publication must always be anonymised.