This international study, was led by Dr. Liesbet Van Eycken, director of the Belgian Cancer Registry, and involved collaborations with the Union for International Cancer Control (UICC) and international partners such as the International Agency for Research on Cancer (IARC), the International Association of Cancer Registries (IACR), the North American Association of Central Cancer Registries (NAACCR) and the Global Initiative for Cancer Registry Development (GICR). The results of this survey of 268 cancer registries were published in the International Journal of Cancer, based on responses from 141 registries, representing all continents.
Cancer registry as foundation for “Cancer Control” activities
Population-based cancer registries (PBCRs) are the backbone of cancer control. They collect data on the incidence, nature, and outcome of cancer in a given region. This study provides a unique global overview of the functioning, challenges, and future plans of these registries.
Belangrijkste bevindingen
- Basic data are well recorded, such as diagnosis and incidence date, but data on stage, treatment, biomarkers, comorbidities and socioeconomic factors are often missing, especially in low- and middle-income countries.
- Only 60% of registries publish survival data, although almost all collect the date of death.
- Data on recurrence, postoperative mortality and patient-reported outcomes are rarely collected, although they are crucial for evaluating the effectiveness of cancer care.
- Main obstacles to expansion are lack of stable funding, limited staff capacity, and lack of structured information in hospitals.
- Half of the registries say they would like to expand, for example by collecting more data, implementing new methodologies, or increasing their coverage area.
Quality, legislation, and reporting
More than half of cancer registries use the IARC check tool to validate data quality. North American registries use their own system: the NAACCR Edit Metafile. Throughout North America and in most of Europe, cancer registration is legally mandated. Most registries are also covered by data protection regulations and are funded by governments. Incidence reports are widely published; interactive tools and survival data are mainly available from high-income countries. Demand for data is high worldwide, especially from governments and researchers.
Call to action
The authors call for increased structural support for PBCRs, including through legislation, funding, training, and technological tools. There is need for international cooperation, standardisation of data collection (such as for recurrence and molecular markers), and better linkage with administrative and clinical data sources. Only then can registries continue to play their crucial role in improving cancer care and outcomes worldwide.
Source:
Van Eycken LJ, Giannopoulos E, Tittenbrun Z, et al. Future of population-based cancer registries: A global perspective—A survey of population-based cancer registries. International Journal of Cancer. 2025 Jun 9. doi: 10.1002/ijc.35516. PMID: 40490886.International Journal of Cancer. 2025 Jun 9. doi: 10.1002/ijc.35516. Epub ahead of print. PMID: 40490886.
