The federal law regulating early cancer detection and registration has been enacted in April 2013. In §65c SGB V, the law regulates the installation, mission and financing of the clinical cancer registration in Germany. At the end of 2015, the state government of Rhineland-Palatinate has decided that the existing epidemiological cancer registry in the state will take over the tasks of clinical cancer registration as well and in accordance with the legal situation. Thus the new state’s cancer registry law has come to effect on January 1, 2016.
Mission and Goals
The mission and goals of the Cancer Registry Rhineland-Palatinate gGmbH are: 1. Analyze data; 2. Support research and 3. Fight cancer.
If at least 90 % of all new cancer diseases are registered, the Cancer Registry Rhineland-Palatinate is able to answer the following questions:
- How many persons fall ill with the different forms of cancer (cancer incidence)?
- Which forms of cancer have increased, which forms have decreased?
- Do instruments of early cancer detection have an effect?
- Could the survival time of affected persons be extended?
- Is there a difference between women and men with regard to patterns of cancer cases?
- How often do disease patterns appear in the different age groups?
- Do individual forms of cancer appear more often in certain regions?
- How many persons that have fallen ill in the past 5 years are living in a specific region?
- And in cooperation with other cancer research institutes: Which factors - e.g. environmental - are involved in the development of cancer?
Some basic facts from the most current yearly report of the Cancer Registry Rhineland-Palatinate from 2012 are:
- Citizens in the area of registration (End of 2011): 3.990.033
- Number of reported new malign cases (diagnostic year 2012): 33.033 (including non-melanotic skin cancers and DCO-cases, DCO: reported by death certificate only)
- cases of death of malign cancers (2012). 11.102 (including non-melanotic skin cancers)
received reports (2014): 78.877 (multiple reports about one tumour are possible and desired)
received certificates of death (2014): ca. 40.000 (digital copies of death certificates that show a cancer diagnosis, received from the Statistical Bureau of Rheinland-Pfalz, of which 12.500 showed a cancer diagnosis). Additionally, information of death is completed by pseudonymized record linkage with 45.000 reports of death from the citizens registration office.
The protection of data is one of the most important corner stones for the Cancer Registry Rhineland-Palatinate. How is your personal information protected?
- The data processing in the Cancer Registry Rhineland-Palatinate is strictly confidential and subject to medical supervision.
- The technical and organizational measures to protect the data conform to the latest safety standards.
- The work of the Cancer Registry Rhineland-Palatinate is accompanied by the State Commissioner for Data Protection and Freedom of Information of the Rhineland-Palatinate.
- Any use of the data for quality assurance and for research purposes is done according to strict, legally prescribed requirements and without a name relation (encrypted/ pseudonym)
- If your name is required for specific research projects, you will be notified in advance for your consent. This information will only be used if you have expressly consented to its usage.
The new state’s cancer registry law has come into effect on 1 January 2016.
- The law obliges all physicians to report new cases of malign tumours, including early stages, to the Cancer Registry Rhineland-Palatinate
- The patients should be informed about the report as early as possible, except if health reasons prevent an informative conversation
- A special regulation is valid for physicians not involved in direct treatment of patients: Because they are unable to inform a patient themselves, they are asked to inform the directly treating physician about the planned report. The treating physician is then expected to inform the patient about the report and report the case to the Cancer Registry Rhineland-Palatinate as wel