Population-Based Clinical Cancer Registration in Germany

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.

Keywords: Germany; benchmarking; cancer; cancer registration; incidence; quality assurance.

Figure 1

Geographical patterns of lung cancer incidence (ICD-10: C33-34) in 2019 in Germany on the level of federal states, age-standardised rates per 100,000 (ASR, European-Standard 1976). Data source: GEKID cancer atlas [12].

Figure 2

Incidence (A) and mortality (B) trends (1999–2019) of common cancers and all cancer sites (excluding C44), age-standardised rates per 100,000 (ASR, World). Y-axis logarithmic displayed. Data source: Centre for Cancer Registry Data at the Robert Koch-Institute [9].

Figure 3

Selected quality indicators (QI), based on German S3 therapy guideline for patients diagnosed and treated in 2020/2021. Each bar reflects a single healthcare provider, involved in treatment with more than 40 cases per year. Data source: Cancer Registry of Schleswig-Holstein (www.cancer-sh.de (accessed on 5 June 2023)).