The Bremen Cancer Registry records essential information on the diagnosis, treatment and course of the disease. On the one hand, treating physicians can access the stored information on their patients in accordance with statutory requirements. On the other hand, analyzing the data helps to gain more knowledge about the spread of cancer and the quality of treatment.

Besides, different institutions and federal states can be compared with regard to the incidence of cancer and the care of patients.

The tasks of the cancer registries are regulated nationwide in the Federal Cancer Registry Act and in the Social Code Book V (§ 65c). The state-specific regulations for the state of Bremen are laid down in the Bremen Cancer Registry Act (BremKRG). According to this law, all medical institutions located in the state of Bremen that diagnose or treat a cancer patient are obliged to report the data to the Bremen Cancer Registry.

The physicians involved in your treatment report the following: Detection of cancer, confirmation of the diagnosis by fine-tissue or cell-related examinations, start of treatment, termination or discontinuing of treatment, change in the disease status that is important for therapy or recurrence of the disease, and, if applicable, death from or with cancer.

The scope of the information to report is uniformly determined nationwide and contains: Personal information (name, address, date of birth, sex, health insurance provider, health insurance number) and clinical data of the tumor (diagnosis, localization and spread of the tumor, date of diagnosis, how the diagnosis was confirmed, reporting institution, type, begin, duration and result of the therapy, course of the disease and, if applicable, death from or with cancer).

The point of acceptance for all reports is the trust center of the Bremen Cancer Registry. There, data are checked and coded based on the valid medical classifications in order to ensure a uniform analysis. For patients who do not live in the state of Bremen or those treated outside of Bremen, the information is also transmitted to the respective cancer registry.

Furthermore, information about your person, the tumor diagnosis and the date of diagnosis will be transmitted to the health insurance provider to pay a cancer registry fee because the health insurance providers support the operation of the clinical cancer registries.

Your physician will be provided with the data by the trust center upon request for the purpose of promoting interdisciplinary cooperation in treatment and quality assurance.

After completion of the work, the trust center provides the encrypted (pseudonymized) identity data such as your name and address together with the clinical data permanently to the analysis center for various scientific analyses. The type and scope of the analyses are defined in the Bremen Cancer Registry Act.

The aim of the analyses of your treatment data and the course of the disease is to gain more knowledge about the causes of cancer, develop more effective early detection and to improve the quality of care.

A scientific advisory board with the participation of patient representatives also reviews the analyses of the cancer registry before the data are provided for research purposes or before publication.

In addition to these analyses, all cancer registries nationwide are required by federal law to transmit encrypted identity data and certain medical data to the following institutions:

• Center for Cancer Registry data at the Robert Koch Institute: There, nationwide epidemiological analyses are performed using data from all cancer registries in the states.
• Joint Federal Committee or an institution designated by it: Analyses of treatment and course of disease data on the federal level take place here.
• Institutions participating in organized screening programs for the purpose of investigating the effectiveness of screening examinations.

Pseudonymized data in the analysis center can be provided to research institutions upon request for research projects provided the Senator for Science, Health and Consumer Protection grants permission.

In the trust center, personal data are deleted 30 years after death or, at the latest, after 120 years after the birth of the concerned person and be replaced by a pseudonym. The analysis center does not hold any personal data. The clinical data are stored permanently in the trust and analysis center of the Bremen Cancer Registry to enable long-term analyses such as time-series analyses.

Data processing in the Bremen Cancer Registry is strictly confidential and subject to medical supervision. The technical and organizational measures to protect the data comply with the current security standards. The data are used for quality assurance and research purposes in accordance with strict, statutory requirements and without reference to a name.

If your name is required for special research projects, you will be asked for your permission in advance. These data are used only if you gave your consent. Of course, you have the right to obtain information about your stored data in the Bremen Cancer Registry at any time.

Reliable information on the incidence of cancer and the care of cancer patients is only possible if all patients with a tumor are recorded. It is important to avoid reporting only a part of the courses of disease—for example, only those going particularly well—to the cancer registry. This would mispresent the treatment and be detrimental to research and improvement of treatment options.

Therefore, an exception to the medical reporting requirement is not permitted by law in the Bremen Cancer Registry. However, as a concerned person you may object to the storage of your identity data either via your physician or directly via the cancer registry. After carrying out the billing and payment procedures, your data will be then pseudonymized in the trust center, too. This means, that you as a person will not be recognizable anymore by your name. Your medical data on the cancer will remain at the registry for analyzing, however. The objection also means that your data can not be provided to treating physicians and clinics.