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Cancer Registry Bavaria

About the Cancer Registry Bavaria

Mission and Goals

Since 1998, the Cancer Registry Bavaria collects data on new cases of cancers in Bavaria, starting first with only half of the counties. Since January 2002 all newly detected malignancies and their early manifestations are registered statewide. When in April 2017 the new Bavarian Cancer Registry Law entered into force, the Bavarian Health and Food Safety Authority got the mandate to host a statewide clinical-epidemiolgical cancer registry. All physicians, dentists and medical institutions participating in cancer diagnosis and cancer care are obliged to notify the cancer registry about maligne and early stages of all cancer sites and benigne cancer of brain.

Cancer registries present a valuable basis in order to learn more about etiology and development of cancer diseases. The tasks of the cancer registry include monitoring trends over time and analysing the regional distribution of cancers, as well as providing information for health services planning and epidemiological research. Analyzing the course of disease and cancer therapie supports quality assessment of cancer care. The cancer registry helps in monitoring and assessing the effectiveness of preventive and curative measures.

Epidemiological analysis of the collected data is done population-based, that is, it is done by area of residence of the patients. This is the only way to investigate regional differences in cancer incidence. Population-based studies have also the advantage that they apply to the whole of the assigned region, not only to a small study group.

Quality assessment of cancer care is done on the base of medical institutions, independently from the patient's place of residence.

Monitoring temporal variations in occurrence of cancer cases and distribution of stages of the disease allows the assessment of prevention and early diagnosis measures, for example population-based mammography screening programs.

Legal basis

The legal basis of the cancer registration in Bavaria is constituted by the State Law on the Bavarian Cancer Registry (BayKRG).

Regional registry offices

The former clinical registries located in Augsburg, Bayreuth, Erlangen, München, Regensburg and Würzburg now act as regional cancer registry offices of the Bavarian Cancer Registry. They are collecting all cancer notifications from their region.

Confidentiality Office

The Confidentiality Office handles patient identity data and is separated from other parts of the cancer registry. The confidentiality office is responsible for the registration of death certificates, for health insurance accounting, pseudonymization of identity data and handling of patient's opt-out requests.

Coordination Unit

The coordination unit is responsible for the central creation of standard operation procedures with the aim of a statewide harmonization of methods and quality assessment. The coordination unit supports the cancer registry's advisory board.

Centre of Early Cancer Detection and Cancer Registration

The centre of cancer registrytion collects data from the regional offices and is responsible for statewide clinical-epidemiological analyses. Data and findings are published in annual reports. The epidemiological data are supplied once a year to the Central Cancer Surveillance Programme at the Robert Koch Institute Berlin, which provides information regarding the epidemiological data on cancer nationwide in Germany.
Anonymous data can be provided for research purposes.

Partner

Clinical Cancer Registration in Bavaria

The Bavarian cancer registry model benefits from the competence of the regional clinical cancer registries at the tumour centres in Bavaria, some of them operating since several decades. These clinical registries now act as regional offices of the Bavarian Cancer Registry. They collect the individual-related data of the cancer patients reported by the physicians, check completeness and consistency of the collected data and evaluate therapy progress and long-term outcomes for quality assurance purpose for the reporting sites. In case of ambiguous data records, further inquires are made.

Cancer Registries of Other Federal States

All cancer registries in Germany follow the cancer registration guidelines of the IARC (International Agency for Research on Cancer). Therefore, the results of the cancer registries are comparable nationwide (completeness of the cancer registration assumed).

With the cancer registries of other federal states the Bavarian Cancer Registry exchanges - within the law - data on cancer patients, which are residents of the other states. The data exchange is done through the Confidentiality Office.

Association of Epidemiological Cancer Registries in Germany (GEKID)

The Bavarian Cancer Registry is a founding member of the Association of Epidemiological Cancer Registries in Germany (GEKID). The main task of the association is to achieve nationwide methodical uniformity by using national and international standards, in spite of different laws regarding cancer registration in the federal states. Moreover, GEKID serves as central partner for the population based cancer registries in cross-state matters.

International collaboration

The Bavarian Cancer Rregistry is member of European Network of Cancer Registries (ENCR) und of International Association of Cancer Registries (IACR).

Robert Koch Institute

Annually the Bavarian Cancer Registry supplies the collected epidemiological data to the Central Cancer Surveillance Programme at the Robert Koch Institute in Berlin, where the epidemiological data of all federal states are gathered and evaluated nationwide. Also, the degree of completeness of the cancer registration is estimated. The report "Cancer in Germany" (Krebs in Deutschland) is based on the data collected by the federal states.

Recorded Data Set

The reported data items are stated by law and include the German wide common record format of ADT and GEKID. Besides personal identifiers (names and address), the data set comprises information on the tumour at incidence (diagnosis, location, histology), staging (e.g. TNM), treatment information (curative/palliative surgery, chemo-/radiotherapy) and information about the course of disease.

Documentation is done according to the guidelines of the European Network of Cancer Registries (ENCR) and the Association of Epidemiological Cancer Registries in Germany (GEKID).

Data Confidentiality

Data are collected, stored and released according to all legal requirements relating to data confidentiality and security. The separation of the Confidentiality Office from the other parts of the Registry ensures that the permanently stored medical information in the Registry Office can not be associated with individuals by unauthorized persons.

The pseudonymization of the identity items (see examples below) is state-of-the-art and was certified by the Federal Office for Information Security. In order to avoid multiple registrations it is important to be able to find out, whether two reported data records belong to the same patient. This is still possible by using the pseudonymized data. But an individual can not be identified anymore, because decoding the data is not possible.

The systems used for data storage and processing are strictly secured against unauthorised access. They are strictly separated from the systems which supply publicly available information.

Examples for pseudomized identification items (shortened strings):

Pseudonymisierung
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M. Meyer 12.09.2019