Cancer registries in Germany: what does the future hold for urology?

Abstract

Cancer registries are defined as systematically collected information in the form of a database on tumour diseases. They can provide information about the quality of oncological care or progress in the treatment of individual cancers over time. Since 1995, all German federal states have been required by law to establish and maintain a cancer registry. The Center for Cancer Registry Data (ZfKD) at Robert Koch Institute has collected this nationwide data since 2009 and compiled it into an annually audited dataset available for research purposes. By virtue of the Cancer Early Detection and Registry Act (KFRG), which was passed in 2013, the cancer registries were given a new perspective. Since then, they have made a central contribution to the quality assurance of oncological care. The cancer registries are mainly financed by the health insurance funds. An upcoming expansion of the dataset including clinical variables and earlier provision by the ZfKD starting next year offers new opportunities for the scientific use of cancer registry data. In particular, the course of the disease will now be mapped in considerable detail. Apart from the cancer registries, there are not many useful supplemental datasets in Germany for the assessment of the nationwide healthcare situation and treatment reality on a national level. The DRG database (case-based hospital statistics) of the Federal Statistics Office records all billing data of all German hospitals with few exceptions. Another interesting supplement to the cancer registry data are the datasets of the structured quality reports, which have been mandatory for hospitals since 2003. In the future, the scientific role of cancer registries is to be further enhanced by the Act on the Pooling of Cancer Registry Data, which was passed in 2021.