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Peer-reviewedCC BY-NC-ND 4.0ESMO Real World Data and Digital Oncology

Population-wide implementation of comprehensive cancer registration in Germany—overview article on current status quo and future perspectives

6 affiliations
  1. 1Saarland Cancer Registry, Saarbrücken, Germany
  2. 2Hessian Cancer Registry, Hessian State Office for Health and Care, Frankfurt, Germany
  3. 3German Cancer Research Center (DKFZ), Epidemiological Cancer Registry Baden-Württemberg & Cancer Survivorship Outcomes and Epidemiology, Heidelberg, Germany
  4. 4Cancer Registry North-Rhine Westphalia, Bochum, Germany
  5. 5Hamburg Cancer Registry, Hamburg, Germany
  6. 6Robert Koch Institute, German Center for Cancer Registry Data, Berlin, Germany

Abstract

Background: The landscape of the existing population-based cancer registries (CRs) has evolved significantly in Germany since 2008. This overview article presents the general framework of cancer registration in Germany, with a particular focus on harmonization and standardization of data collection and registration processes. Moreover, it outlines key challenges and limitations and illustrates both current status and future scope of utilization of comprehensive CR data with clinical and epidemiological relevance.

Materials and methods: Federal and state legislation, resources such as the nationally standardized oncological core dataset for cancer reporting and its technical specifications, jointly developed and maintained by consortia of the CRs and stakeholders, as well as registration recommendations of national and international organizations, have contributed to harmonization, standardization, and validation of data collection and registration processes.

Results: The current scope of utilization of CR data is illustrated through a variety of topical examples, including consecutive monitoring of cancer burden on a population level, evaluation of the effectiveness of early detection and screening programs, monitoring of the provision of cancer care and implementation of clinical practice guidelines, and identification of gaps between evidence-based recommendations and real-world practice. Linkage with external real-world data and usage of CR data for novel study designs and research methods are gaining importance.

Conclusions: This overview concludes with current developments and perspectives on future directions regarding both the national developments and integration of CRs into the European Health Data Space.

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BibTeX
@article{holleczek2026populationwide,
  title = {{Population-wide implementation of comprehensive cancer registration in Germany—overview article on current status quo and future perspectives}},
  author = {B. Holleczek and S.-Z. Kim-Wanner and V. Arndt and Y. Diekmann and A. Nennecke and B. Barnes},
  journal = {ESMO Real World Data and Digital Oncology},
  year = {2026},
  month = oct,
  doi = {10.1016/j.esmorw.2026.100808},
  url = {https://doi.org/10.1016/j.esmorw.2026.100808},
  note = {CC BY-NC-ND 4.0},
}
RIS
TY  - JOUR
TI  - Population-wide implementation of comprehensive cancer registration in Germany—overview article on current status quo and future perspectives
AU  - B. Holleczek
AU  - S.-Z. Kim-Wanner
AU  - V. Arndt
AU  - Y. Diekmann
AU  - A. Nennecke
AU  - B. Barnes
PY  - 2026
DA  - 2026/10/28
JO  - ESMO Real World Data and Digital Oncology
DO  - 10.1016/j.esmorw.2026.100808
UR  - https://doi.org/10.1016/j.esmorw.2026.100808
AB  - Background: The landscape of the existing population-based cancer registries (CRs) has evolved significantly in Germany since 2008. This overview article presents the general framework of cancer registration in Germany, with a particular focus on harmonization and standardization of data collection and registration processes. Moreover, it outlines key challenges and limitations and illustrates both current status and future scope of utilization of comprehensive CR data with clinical and epidemiological relevance.  Materials and methods: Federal and state legislation, resources such as the nationally standardized oncological core dataset for cancer reporting and its technical specifications, jointly developed and maintained by consortia of the CRs and stakeholders, as well as registration recommendations of national and international organizations, have contributed to harmonization, standardization, and validation of data collection and registration processes.  Results: The current scope of utilization of CR data is illustrated through a variety of topical examples, including consecutive monitoring of cancer burden on a population level, evaluation of the effectiveness of early detection and screening programs, monitoring of the provision of cancer care and implementation of clinical practice guidelines, and identification of gaps between evidence-based recommendations and real-world practice. Linkage with external real-world data and usage of CR data for novel study designs and research methods are gaining importance.  Conclusions: This overview concludes with current developments and perspectives on future directions regarding both the national developments and integration of CRs into the European Health Data Space.
SN  - 2949-8201
ER  -