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New tasks, new data

Under a new legal framework, clinical and epidemiological data from the cancer registries of the German federal states are to be merged at the Centre for Cancer Registry Data (ZfKD) at the Robert Koch Institute. The main aim is to provide a more comprehensive database for cancer research.

A two-stage process is planned: In the first step - at the beginning of 2023 - the data set currently transmitted annually by the cancer registries to the ZfKD will be supplemented with various clinical data. In particular, the most important information on therapy and the course of the disease will be added. Furthermore, the deadline for transmitting the data will be reduced from two years to one year. As before, the data set may also be made available to third parties for scientific research upon application. A new scientific committee will be founded to accompany the ZfKD in these points and assess the applications.

In the second stage, a platform will be created to allow access to additional and more up-to-date data in the registries as well as enable linkage of cancer registry data with additional data not available to the registries (for example from scientific studies). The ZfKD will then serve as a central contact point for applications and data use registration. By the end of 2024, the cancer registries, the ZfKD and other stakeholders from the fields of health care and research will develop a concept for such a platform.

What will change in practice?

  • Additional data at the ZfKD

    In the first step, starting in 2023, the scope of the data transmitted by the cancer registries of the federal states to the ZfKD will be expanded. Particularly, data on the clinical course and the most important information on treatment will be added.

  • Provision of data for research purposes

    The data set will still be made available to researchers on application, but the procedure will change. If there is an elevated risk of re-identification of patients, the data will only be provided in aggregated form or via controlled remote access. Further information about the new process will be available on our website soon.

  • Interoperability of data

    A fundamental requirement for pooling data from multiple cancer registries is a uniform data set. In principle, this has already been realized in the creation of the “basic oncological data set” of the ADT and the Society of Epidemiological Cancer Registries in Germany (GEKID). It is now stipulated that this “basic oncological data set” must be regularly updated in order to keep cancer registration up to date with the current state of science. On the basis of this dataset, additional specifications must be made for data collection and processing to ensure technical, semantic, syntactic and organizational interoperability.

  • Scientific Committee

    A scientific committee will be established at the ZfKD. Its main task is to assess applications for data use, paying special attention to data protection.

  • Scientific Advisory Board

    As before, the ZfKD is accompanied by a scientific advisory board. Members are representatives of various institutions and associations, from medical societies, health insurance companies as well as physician and patient representatives, among others. The focus here is to provide strategic guidance to the ZfKD, for example concerning public relations and reporting.

  • Platform for data pooling

    In the second step, a platform is to be created that will enable nationwide analysis of cancer registry data available only in the registries as well as linkage of cancer registry data with other data. This platform will be technically supported by the ZfKD and will provide expertise for clinical-scientific evaluation of the cancer registry data. A concept for this platform will be presented by 2024.

  • Reporting

    - The report "Cancer in Germany" will still be published every two years. It focusses on cancer incidence and mortality and illuminates epidemiologically relevant trends.

    - In addition, a summary report will be published every five years that details developments in prevention, early detection, treatment and aftercare of cancer in Germany as well as in an international comparison. This will be published for the first time in 2026 and replaces the previous "Bericht zum Krebsgeschehen".

    - As before, there will be an interactive database on the website (an upgrade is planned) as well as regular information on the epidemiology of cancer in Germany.

    - Overall, cancer reporting should become more topical and up-to-date.

Date: 31.08.2021