Cancer registry; participation

In Bavaria, around 70,000 people are diagnosed with cancer every year. Causal research and quality assurance require good data in order to better prevent cancer, detect it early or treat it successfully.

For contact details of the responsible authoritiy and local valid information select under "Select location" a location.

In 2013, the federal legislator passed the Cancer Early Detection and Registry Act (KFRG). As part of the implementation of this law in Bavaria, the population-based cancer registry established in 1998 was expanded into a clinical-epidemiological cancer registry. Since the Bavarian Cancer Registry Act (BayKRegG) came into force on April 1, 2017, the Bavarian State Office for Health and Food Safety (LGL) has been the cancer registry authority.

Particular attention was paid to data protection regulations in the Bavarian Cancer Registry Act and the associated Ordinance on the Implementation of the Bavarian Cancer Registry Act (BayKRegV, dated March 16, 2018). On the one hand, all requirements for meaningful evaluations should be met, while on the other hand, the law regulates the individual's right to informational self-determination when disclosing personal data.

What is the Bavarian Cancer Registry?

The Bavarian Cancer Registry collects all important information on the diagnosis and course of the disease as well as information on therapy in cancer treatment. The data can be accessed by doctors treating cancer patients. Another important task of the Bavarian Cancer Registry is to participate in quality assurance measures for organized cancer screening programs.

The Bavarian Cancer Registry examines the regional distribution and trend development of cancer cases and makes this statistical-epidemiological data available to the public. It also provides data for quality assurance and certification and, under certain conditions, for health services research and epidemiological research.

The Bavarian Cancer Registry consists of six regional centers for cancer registration, the Centre for Early Cancer Detection and Cancer Registration (ZKFR) in Nuremberg and the trust centre, which is also located at the LGL and is separate from it in terms of space, technology, organization and personnel.

What do I have to do with it?

A cancer registry can only provide meaningful information if at least 90% of all new cases are fully recorded. This registration rate is stipulated by the KFRG. For this reason, your doctor is also legally obliged to forward your cancer-related data to the Bavarian Cancer Registry.

If you wish, your doctor will also inform you in more detail about the content of the report. In addition, you can find out from the Bavarian Cancer Registry at any time what data is stored about you (right to information).

You have the right to object to the permanent storage of your identity data (name, address, health insurance number) that has already been recorded and will be recorded in the future, as well as the data that must be reported in accordance with Art. 4 BayKRegG (disease-related medical data) at any time in writing - either directly to the Bavarian Cancer Registry's trust center or via your doctor. Your data will then be deleted from the Bavarian Cancer Registry as soon as it is no longer required for statutory billing purposes. This means that you will no longer be identifiable by name and your data will no longer be available for the purposes of the Bavarian Cancer Registry described above. In order to implement the right to object, only the Bavarian Cancer Registry's Trust Office is authorized to store the respective identity data in a separate, confidential list and to use it exclusively for the purpose of data comparison with future reports.

Cancer registry data is of great importance for researching and combating cancer and for the development of effective treatment methods for your disease. We therefore ask for your support!

How will my data be passed on?

If you have been diagnosed with a malignant cancer or its early form, hospital doctors and general practitioners (dentists) will report this to the relevant regional center of the Bavarian Cancer Registry. Cancer registries in other federal states also process such data in the event of a report from a practitioner outside Bavaria. In addition, data from death certificates are forwarded to the Bavarian Cancer Registry.

The reports are then forwarded to the trust center of the population-based cancer registry. There, your personal data is encrypted in such a way that names and addresses are no longer recognizable in subsequent evaluations (pseudonymization). The trust center stores and keeps your identity data. This data is needed again when information is retrieved from the regional centers by the doctors treating you.

Once a year, anonymized population-based cancer registry data is forwarded to the Robert Koch Institute for cross-state evaluation. Pseudonymized clinical data is forwarded on behalf of the Federal Joint Committee for the evaluation of cancer screening programs. Research institutions can also use anonymized or pseudonymized data for scientific projects.

If you have any questions or concerns regarding the protection of your data, you can contact the trust center or the responsible regional center of the Bavarian Cancer Registry at any time. Contact details can be found under "Further links".