Duty to report

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.

Whether a registration form is available depends on the competent cancer registry which in turn is dependent on the canton of residence of the patient.

The NACR does not issue a registration form but provides an explanatory registration leaflet. The leaflet contains a list of all the information to be transmitted to the cancer registry.

Leaflet in German

Leaflet in French

Leaflet in Italian

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 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 familial or personal predisposing factors, and pre-existing and accompanying diseases.

Link to detailed cancer data dictionary v1.1.

Link to full code lists of the cancer data dictionary v1.1.

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.

Only confirmed diagnoses are under duty to report. Below is an example from the perspective of a gynaecologist (case description in bold text, comments on duty to report in italic text):

I palpate a change in the breast during a routine evaluation of a female patient (not under duty to report, since this is only suspicion). I refer her for mammography. The very experienced radiologist describes a suspicious lesion (not under duty to report, since this is only suspicion) and performs a biopsy after discussion with the primary care doctor

(not under duty to report, since this is only suspicion). The involved pathologist, who never sees the patient, establishes the diagnosis of invasive ductal breast carcinoma (under duty to report, since a diagnosis is confirmed). The concerned patient goes to her gynaecologist (the gynaecologist tells the affected patient the diagnosis. Thus, the gynaecologist is the person who has the responsibility to inform, orally and in writing, (using the brochure of the NACR offered free in 14 languages by NACR and available for order in four languages –see link below) the affected patient. The gynaecologist must report the date of the patient notification to the cancer registry) who sees the results, but cannot determine the extent of the tumour and refers the patient to a breast centre. There an MRI is obtained (under duty to report, because the MRI is part of the diagnostic work-up and thus belongs to the data under duty to report that are registered during the diagnostic work-up) and subsequently the tumour board (under duty to report, because the data of the tumour board belong to the treatment data under duty to report), in absence of the patient, determines the subsequent management. The primary care doctor is informed in cc, and the distraught patient comes with her husband to the appointment. (In case the gynaecologist hasn`t told the patient the diagnosis yet, the primary care doctor will most likely do so. In this case the primary care doctor is also responsible for informing the patient orally and in writing (through brochure of the NACR) and reporting this date to the cancer registry.)

In order for the cancer registry to make enquiries if necessary, contact details of the reporting person or institution must be provided. This includes first and last name, function of the contact person and name of the institution.

The CRA contains a provision (art. 27) also allowing for cancer registration data to be used to evaluate quality of diagnosis and treatment. However, this data may only be processed and published if the person or institution under obligation to report have given their consent for publishing data allowing their identification.

Pursuant to the Cancer Registration Act (CRA), all initial diagnoses (including second tumours) and their recurrences/metastases/transformations (if known on the basis of their relevance for diagnosis and/or treatment) made on 1 January 2020 or later are subject to the duty to report. A recurrence is a relapse of an earlier cancer; it is thus part of the initial diagnosis that in the previous example was established before 2020 and before the entry into force of the CRA. A recurrence that pertains to an initial diagnosis established before 2020 is not subject to the duty to report. The CRA does not stipulate that the affected patients have to be informed.

In this context, we kindly ask you to continue reporting initial diagnoses made before 01.01.2020. Consent has been given by the Ethics Committee of the Canton of Zürich (German acronym: BASEC-Nr. PB 2016-01643), valid until 31 December 2022, for cantonal cancer registries to collect data obtained before 31 December 2019 that were not, or incompletely, registered. The goal is to avoid a gap in data registration due to the change of system. The consent is to be used for data collection from patients with residence in Switzerland (at the time of the initial diagnosis), with the exception of the Cantons of Schaffhausen and Schwyz, which started cancer registration only in 2020.

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.

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, the AHVN13 must be provided for the unambiguous identification of the patient.

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.

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, the AHVN13 must be provided for the unambiguous identification of the patient.

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); also, there is an electronic transmission standard. Your information system may offer a corresponding interface.

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, the AHVN13 must be provided for the unambiguous identification of the patient.

Each patient has the right to refuse the registration in the cancer registry. Before a case is registered, the cancer registry waits for three months after it receives a report to see if a refusal is submitted (the so-called waiting period, see Art. 17, CRO). This period starts with the day of the notification of the patient. If the date of the notification of the patient is not available, no data of the patient may be registered in the 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.

If you are the doctor who established the initial diagnosis, you have a duty to report. Your report must contain the insurance number (AHVN13) of the reported patient, the date of notification about the cancer registration to the reported patient (see section Duty to inform), and the final diagnosis.

The duty to report pursuant to the Cancer Registration Act is a professional obligation in accordance with Art. 40 of the Law on Medical Professions (MedBG). The cantonal authorities oversee the implementation of the duty to report. Art. 40 MedBG applies to all professionally independent university level healthcare providers. In case of a breach of the duty to report, the canton can also use measures stipulated in the cantonal health law.

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).

The duty to report pursuant to Art. 3 CRA does not cover all data as per paragraph 1, but only those data that pertain to the specialty of the person or institution with duty to report (in accordance with the explanations in Art. 3, paragraph 3, letter a. CRA). That means that pathologists do not have the duty to request a missing AHVN13 from the ZAS in order to complete their report.

However, the AHVN13 as unambiguous personal identifier is used in cancer registration not only to cross-check registered data against other data sources (Central Compensation Office (ZAS), cause-of-death statistics, early-diagnosis programmes, etc). It is also used by cancer registries to assign incoming data from various sources accurately to each case.

Therefore, for considerations of quality assurance, the AHVN13 should be included in the report whenever possible/available by pathology institutes as well as all other persons and organisations with duty to report.

The refusal involves the registration and preservation of data in the cancer registry, not the reporting. The service provider has the duty to report even if the patient states orally that they will submit a refusal. There is only one exception from the duty to report (Art. 6, Abs. 2, CRO). This applies when the patient submits to the doctor a confirmation of the refusal issued by the cancer registry.

The rule here is as follows, based on the guidelines in effect in Europe:

• Malignant neoplasms diagnosed histologically are always under duty to report
• Cytologically diagnosed Bethesda I-V, or THY 1-4, without histological confirmation are not under duty to report. (Note however that, according to existing guidelines, Bethesda V or THY 4 lesions are systematically surgically resected; malignancy is confirmed histologically in most cases. A histologically confirmed case is under duty to report.)
• Cytologically diagnosed Bethesda VI or THY 5 is under duty to report even in the absence of histologic confirmation.