1. I was diagnosed with cancer. Why was I notified verbally and in writing of the cancer registration?

    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 the registration. It should also ensure that you, as patient, have the opportunity to ask questions.

  2. Is there any rule regarding the point of time when I, as patient, must be notified of the cancer registration?

    The healthcare professional has the discretion to determine the most opportune point of time for the notification of the cancer registration. You should however be notified of the cancer registration as soon as possible after you have been informed of the diagnosis.

  3. Why is reporting of cancer mandatory?

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

  4. I would like an independent second opinion regarding my cancer diagnosis. Will the relevant doctor receive information regarding my diagnosis and the course of the disease from the cancer registry?

    Your data will always be treated confidentially. 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 concern the way information is stored, who may use the information and when the information 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 plans, health insurers, or employers have no access to this information. Also, the information is not forwarded to your doctor. In summary: doctors who diagnose and treat cancer have a duty to report. They do not receive individual information regarding cancer patients from the cantonal cancer registries, or the National Agency for Cancer registration (NACR).

  5. Who has access to my data stored for the purpose of cancer registration?

    Only employees of the cancer registries have access to personal information (eg, first name, last name, address). 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 concern the way information is stored, who may use the information and when the information 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 plans, health insurers, or employers have no access to this information.

  6. Who is responsible for registering my cancer? Do I, as patient, have anything to do?

    The practicing doctor 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 that. If you are in agreement with the reporting and registration, you as patient do not have to do anything.

  7. Do you generate any reports for the public?

    The National Agency for Cancer Registration (NACR), the Childhood Cancer Registry (CCR) and the Federal Statistical Office (FSO) process the nationwide collected information and inform regularly the Swiss population, doctors, politicians and research scientists about cancer in Switzerland. The data are used, among others, for the National cancer statistic and the Reporting on cancer; these are explained in more detailed below.

    National cancer statistic

    The National cancer statistic consists of the Cancer Monitoring (available every year in online form) and the Cancer Report (publication issued every five years in print form). In the context of the Cancer Registration Act, monitoring means observation without interpretation. Consequently, the Cancer Monitoring is a routine, standardised observation of data on cancer in Switzerland.

    The National Cancer Report has the goal to explain cancer in more detail and thus delves more deeply into the content than the annual monitoring. The National Cancer Report gives scientists, healthcare providers, politicians/the state, as well as the interested public a glimpse into the incidence and course of cancerous diseases in time and space. Also, the Report will offer in the future the option to use these observations on diagnosis and therapy options for the healthcare planning of various patient groups.

    The Federal Statistical Office (FSO), in cooperation with the National Agency for Cancer Registration (NACR), the Childhood Cancer Registry (CCR), has the responsibility to generate the National cancer statistic.

    Reporting on cancer

    In the future, the Report on cancer will be an addition to the National cancer statistic. In the context of the Cancer Registration Act (CRA), the Reporting on cancer will provide interpretative considerations and issue necessary recommendations.

    The Reporting on cancer provides answers to current issues of health policy on cancer. Intended recipients are politicians at various levels, as well as various actors in healthcare (outpatient surgeries, speciality bodies, researchers, etc).

    Detailed analysis and descriptions of the health situation and of the care of various population- and patient groups provide policymakers and other mentioned actors with an important framework for making decisions. The interpretation of cancer data takes into account current scientific questions and information.

    The National Agency for Cancer Registration (NACR) and the Childhood Cancer Registry (CCR), have the responsibility to generate the Reporting on cancer.

  8. I would like to know what information on my cancer was stored as part of the cancer registration. Is this possible and how do I go about it?

    You have the right to know at any moment what is stored in the cancer registry on your cancer and your person. You have 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 that 20 at the time of diagnosis. Please contact the responsible cancer registry. The contact information for the cancer registries is here: https://www.nacr.ch/en/partners-health-care/cancer-registries/

  9. How will my data be protected?

    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 concern the way information is stored, who may use the information and when the information 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 plans, health insurers, or employers have no access to this information.

  10. May I tell my doctor that they are not allowed to report anything on me?

    The doctor who tells you the diagnosis, as well as your treating doctors, have a statutory duty to report your data on your cancer to the responsible cancer registry. You have however the right to refuse the registration of your data. Important: the refusal must be in writing. You may draft your own written refusal, or you may use the form available on the web pages of the cancer registry. In case you wish to draft your own written notification, please note that the refusal 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 refusal form by mail. The contact information for the cancer registries is here: https://www.nacr.ch/en/partners-health-care/cancer-registries/.

  11. I am in a business relationship with the cantonal cancer registries. What can I do so that the employees of the cancer registry do not find out that I have cancer?

    Since the introduction of the Cancer Registration Act (CRA) on 1 January 2020, persons or institutions who diagnose or treat a cancerous disease or reportable precursor of a cancerous disease have a statutory duty to report. The duty to report exists even when you have notified your doctor that you have used or will use your right to refuse. The refusal involves the registration and preservation of data in the cancer registry, not the reporting. The data may not be reported to the cancer registry only if you, as patient, have presented the doctor with a confirmation of refusal issued by the cancer registry (art. 6, par. 2) CRO). Even in such a case, identifiable reports on your person could be sent to the responsible cantonal cancer registry (eg, from laboratories). All employees of the cancer registries are subject to confidentiality obligations. Only they may process your personal information (eg, family name, first name, address). Violations of the confidentiality obligation will be criminally prosecuted. For your information: if you submit your refusal before the expiration of the grace period, your data will not be registered in the cancer registry. If you submit your refusal after the expiration of the grace period, your data will be anonymised. In both cases, all existing and incoming documents pertaining to your cancer will be destroyed.

  12. I do not want any person with the exception of my doctor to know that I have cancer. How do I go about it?

    Since the introduction of the Cancer Registration Act (CRA) on 1 January 2020, persons or institutions who diagnose or treat a cancerous disease or reportable precursor of a cancerous disease have a statutory duty to report. The duty to report exists even when you have notified your doctor that you have used or will use your right to refuse. The refusal involves the registration and preservation of data in the cancer registry, not the reporting. There is only one exception from the duty to report (art. 6, par. 2, CRO). This applies when you, as patient, have presented the doctor with a confirmation of refusal issued by the cancer registry. Even in such a case, identifiable reports on your person could be sent to the responsible cantonal cancer registry (eg, from laboratories). Your data will always be treated confidentially. 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. All employees of the cancer registries are subject to confidentiality obligations. Only they may process your personal information (eg, family name, first name, address). Violations of the confidentiality obligation will be criminally prosecuted. For your information: if you submit your refusal before the expiration of the grace period, your data will not be registered in the cancer registry. If you submit your refusal after the expiration of the grace period, your data will be anonymised. In both cases, all existing and incoming documents pertaining to your cancer will be destroyed.

  13. I would like to submit a refusal to register my cancer. How do I go about it?

    You may submit a refusal to register your cancer any time. This is your right. Important: the refusal must be in writing. You may draft your own written refusal, or you may use the form available on the web pages of the cancer registry. In case you wish to draft your own written notification, please note that the refusal 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 refusal form by mail. The contact information for the cancer registries is here: https://www.nacr.ch/en/partners-health-care/cancer-registries/.

  14. I would like to submit a refusal to register my cancer, but I am not able to download the refusal form. What can I do?

    The refusal must be in writing, but you may draft a written notification yourself. Please note that the refusal 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 refusal form by mail. The contact information for the cancer registries is here: https://www.nacr.ch/en/partners-health-care/cancer-registries/.

  15. How do I know that my refusal has become effective?

    After the written refusal is processed by the cancer registry, you will receive a written confirmation that the refusal has been processed and made effective. Please note that the refusal must contain the following: first name, family name, address, date of birth, insurance number (AHVN13), date, and signature. You may use the form available on the web pages of the cantonal cancer registry or the Childhood Cancer Registry. If you have questions regarding the refusal, you may contact any time one of the cantonal cancer registries or the Childhood Cancer Registry. The contact information for the cancer registries is here: https://www.nacr.ch/en/partners-health-care/cancer-registries/.

  16. I have submitted a refusal. May I cancel the refusal?

    You may cancel the refusal any time. Contact one of the cantonal cancer registries or the Childhood Cancer Registry. The contact information for the cancer registries is here: https://www.nacr.ch/en/partners-health-care/cancer-registries/.