Population-Based Clinical Cancer Registration in Germany

SIMPLE SUMMARY: Cancer registration has a long tradition in Germany. In 2013, new legislation obliged all German states to implement additional clinical cancer registration, including standardised documentation of all therapies, recurrences and further follow-up. The overall aim was to use cancer registry data to measure and improve the quality of cancer care. Now, 10 years later, the status of the extended cancer registration will be presented. In 2019, more than 500,000 new cancer cases were reported to the federal cancer registries. Age-standardised incidence has decreased slightly over the last decade. The five-year relative survival rate for all cancers was 67% for women and 63% for men. Therapy data show that an evidence-based assessment of quality of cancer care, including provider-based benchmarking, is feasible. Feedback of such results directly to healthcare providers should further improve cancer care. In conclusion, the introduction of population-based clinical cancer registration in Germany can be considered a success. ABSTRACT: Introduction: In 2013, a new federal law obligated all German federal states to collect additional clinical data in population-based cancer registries as an active tool for monitoring and improving the quality of cancer care, increasing transparency and promoting health research. Now, 10 years later, the current status of the expanded cancer registration is presented, including current figures on cancer in Germany. Methods: Reporting of cancer is mandatory for physicians, and about 5 to 10 reports from different healthcare providers are expected for each case. A uniform national dataset of about 130 items is used, and reports are usually sent electronically to the registry. We used the most recent data available from cancer registries up to the year of diagnosis in 2019. We calculated incidence rates and 5-year relative survival (5YRS) for common cancers. Data on clinical outcomes and benchmarking based on quality indicators (QIs) from guidelines were provided by the Cancer Registry Schleswig-Holstein (CR SH). Results: All federal state cancer registries met most of the previously defined national eligibility criteria. Approximately 505,000 cancer cases were registered in 2019, with breast, prostate, colorectal and lung cancer being the most common cancers. The age-standardised cancer incidence has slightly decreased during the last decade. and spatial heterogeneity can be observed within Germany. 5YRS for all cancers was 67% and 63% for women and men, respectively. Therapy data for rectal cancer in 2019–2021 from the CR SH are shown as an example: 69% of the registered patients underwent surgery, mostly with curative intent (84%) and tumour-free resection (91%). Radiotherapy was given to 33% of the patients, and chemotherapy was given to 40%. Three selected QIs showed differences between involved healthcare providers. Discussion: The implementation of population-based clinical cancer registration can be considered a success. Comprehensive recording of diagnosis, treatment and disease progression and the use of registry data for quality assurance, benchmarking and feedback have been implemented.