Table of Content
Remit
The Hamburg Cancer Registry (HCR) is an integrated clinical-epidemiological cancer registry for Hamburg as a place of residence and treatment. Our goal is to improve the quality of oncological care by providing a neutral data basis on cancer incidence and contributing to transparency. The Hamburg Cancer Registry is mandated under state and federal law to continuously and comprehensively record and process information on the diagnosis, therapy and course of all cancer patients treated in Hamburg, to make this information available for scientific research, and to evaluate and publish the results.
Essential conditions for the usefulness of the cancer registry are the completeness and quality of the data collected. To this end, we ask for your support and cooperation, in particular:
- as patients, to allow the collection and transmission of data,
- as doctors treating cancer patients, to comply with the obligation to report,
as interested parties from the public, care, research and politics, to use the data of the cancer registry
History
As early as the end of the 1920s, committed physicians in Hamburg established the first documentation system for cancer deaths and new cases in the resident population. After interruptions due to the Second World War and the emerging data protection discussion, the Hamburg Cancer Registry Act provided a legal basis from 1985 onwards to gain knowledge about the frequency, distribution and temporal trends of malignant neoplasms. In April 2013, the stakeholders in oncological care in Hamburg agreed to jointly establish nationwide clinical cancer registration. Since 2014, the registration has been expanded to include treatment and disease progression in cancer patients regardless of their place of residence. Detailed information on the development and work of the HCR can be found in the Hamburg Cancer Documentation (in particular Chap. 5).
Information flow
All hospitals, medical practices and other physician-managed oncological care facilities in Hamburg transmit information to the HCR based on their statutory reporting obligation and the uniform national data set for the following reporting occasions: diagnosis and histological confirmation, start and end of therapeutic measures as well as therapy-relevant changes in the disease status, i.e. progression events such as progression and relapse, and death.
The information is first assigned to persons and cases of disease and so compiled, checked for completeness and plausibility, and prepared for further use such as reporting. In addition, the HCR processes information from death certificates of the health authorities, from the residents' registration office, and from other comprehensive clinical cancer registries.
Chapter overviewLaw and data protection
The relevant laws for the establishment and operation of the HCR are the Hamburg Cancer Registry Act (HmbKrebsRG) with the associated ordinances and notices, the Federal Cancer Registry Data Act (BKRG) and § 65c of the Fifth Book of the Social Code (SGB V), which was introduced via the Cancer Early Detection and Registry Act (KFRG). Due to the promotion of treatment-related cancer registration by the health insurance funds, the SHI criteria also apply (see below).
The information collected in the HCR is subject to strict data protection regulations based on legal requirements and specific security concepts, coordinated with the Hamburg Commissioner for Data Protection and Freedom of Information. Reports to the HKR are transmitted via secured VPN tunnels. Personal plain text data is processed in a specially delimited trust area of the Registry. The storage of this identity data can be objected to by the reporting doctors or the HCR at any time. Servers and rooms are secured by an alarm system, and unauthorised access is also precluded by secure access procedures. The use and release of data are regulated in detail by law.
Chapter overviewLinks to legal bases
- Hamburg Cancer Registry Act (HmbKrebsRG)
- Hamburg Cancer Registry Accounting Ordinance (HmbKrebsRAbrVO)
- Hamburg Mammography Screening Evaluation Ordinance (HmbMSEvalVO)
- Federal Cancer Registry Data Act (BKRG)
- Cancer Registry Data Aggregation Act
- Cancer Early Detection and Registry Act (KFRG) – SGB V § 25a and § 65c)
- GKV criteria for the promotion of clinical cancer registries of 20.12.2013
Networking
The HKR cooperates with other cancer registries and networks. The goals of the collaboration are, in particular, uniform standards, comparability of data and results, and joint study participation. The most important structures include: