odmj
OncoDaily Medical Journal
ODMJ
3067-6444
OncoDaily Medical Journal
US
4701
10.69690/ODMJ-001-0811-4701
Original Research
The Role of National and Regional Cancer Registries in Shaping Cancer Care Policies
Fabio
Girardi
Division of Medical Oncology 2, Veneto Institute of Oncology IOV-IRCCS, Padua, Italy
fabio.girardi@iov.veneto.it
Stefano
Guzzinati
Epidemiological Department, Azienda Zero, Padua, Italy
Pietro
Napolitano
Division of Medical Oncology 2, Veneto Institute of Oncology IOV-IRCCS, Padua, Italy / Department of Surgery, Oncology and Gastroenterology, University of Padua, Padua, Italy
Claudia
Allemani
Cancer Survival Group, Department of Non-communicable Disease Epidemiology, London School of Hygiene and Tropical Medicine
Vittoria
Dieci Maria
Division of Medical Oncology 2, Veneto Institute of Oncology IOV-IRCCS, Padua, Italy / Department of Surgery, Oncology and Gastroenterology, University of Padua, Padua, Italy
Valentina
Guarneri
Cancer Survival Group, Department of Non-communicable Disease Epidemiology, London School of Hygiene and Tropical Medicine
11
08
2025
ODMJ-001-0811-4701
Copyright (c) 2025 OncoDaily Medical Journal
2025
OncoDaily Medical Journal
Cancer Care
Cancer Registries
National Cancer Registries
Regional Cancer Registries
production-ready-file-url
[
White MC, Babcock F, Hayes NS, Mariotto AB, Wong FL, Kohler BA, et al. The history and use of cancer registry data by public health cancer control programs in the United States. Cancer. 2017 Dec 15;123 Suppl 24(Suppl 24):4969-76. doi: 10.1002/cncr.30905.
]
[
The Lancet. Cancer registries: the bedrock of global cancer care. Lancet. 2025 Feb 1;405(10476):353. doi: 10.1016/S0140-6736(25)00189-8. Erratum in: Lancet. 2025 Mar 29;405(10484):1056. doi: 10.1016/S0140-6736(25)00557-4.
]
[
Siesling S, Louwman WJ, Kwast A, van den Hurk C, O’Callaghan M, Rosso S, et al. Uses of cancer registries for public health and clinical research in Europe: results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012. Eur J Cancer. 2015 Jun;51(9):1039-49. doi: 10.1016/j.ejca.2014.07.016. Epub 2014 Aug 15.
]
[
Coleman MP, Démaret E. Cancer registration in the European Community. Int J Cancer. 1988 Sep 15;42(3):339-45. doi: 10.1002/ijc.2910420306.
]
[
Anttila A, Lönnberg S, Ponti A, Suonio E, Villain P, Coebergh JW, et al. Towards better implementation of cancer screening in Europe through improved monitoring and evaluation and greater engagement of cancer registries. Eur J Cancer. 2015 Jan;51(2):241-51. doi: 10.1016/j.ejca.2014.10.022. Epub 2014 Dec 4.
]
[
Fritz A, Percy C, Jack A, Shanmugaratnam K, Sobin L, Parkin DM, et al. International classification of diseases for oncology. 3rd ed., 1st rev. Geneva: World Health Organization; 2013. Available from: https://apps.who.int/iris/bitstream/handle/10665/96612/9789241548496_eng.pdf
]
[
Parkin DM, Bray F. Evaluation of data quality in the cancer registry: principles and methods. Part II, completeness. Eur J Cancer. 2009 Mar;45(5):756-64. doi: 10.1016/j.ejca.2008.11.033. Epub 2009 Jan 6.
]
[
European Network of Cancer Registries. European Network of Cancer Registries [Internet]. [cited 2025 Aug 12]. Available from: https://www.encr.eu/
]
[
International Association of Cancer Registries. International Association of Cancer Registries [Internet]. Lyon: International Agency for Research on Cancer; [cited 2025 Aug 12]. Available from: http://www.iacr.com.fr/.
]
[
North American Association of Central Cancer Registries. North American Association of Central Cancer Registries [Internet]. Springfield (IL): NAACCR; [cited 2025 Aug 12]. Available from: https://www.naaccr.org/.
]
[
Andersen MR, Storm HH; Eurocourse Work Package 2 Group. Cancer registration, public health and the reform of the European data protection framework: abandoning or improving European public health research? Eur J Cancer. 2015 Jun;51(9):1028-38. doi: 10.1016/j.ejca.2013.09.005. Epub 2013 Oct 10.
]
[
European Commission. European Cancer Information System [Internet]. Luxembourg: European Commission, Joint Research Centre; [cited 2025 Aug 12]. Available from: https://ecis.jrc.ec.europa.eu/.
]
[
Organisation of European Cancer Institutes. Organisation of European Cancer Institutes [Internet]. Brussels: OECI; [cited 2025 Aug 12]. Available from: https://www.oeci.eu/.
]
[
De Angelis R, Demuru E, Baili P, Troussard X, Katalinic A, Chirlaque Lopez MD, et al. Complete cancer prevalence in Europe in 2020 by disease duration and country (EUROCARE-6): a population-based study. Lancet Oncol. 2024 Mar;25(3):293-307. doi: 10.1016/S1470-2045(23)00646-0. Epub 2024 Jan 30.
]
[
Allemani C, Weir HK, Carreira H, Harewood R, Spika D, Wang XS, et al. Global surveillance of cancer survival 1995-2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in 67 countries (CONCORD-2). Lancet. 2015 Mar 14;385(9972):977-1010. doi: 10.1016/S0140-6736(14)62038-9. Epub 2014 Nov 26. Erratum in: Lancet. 2015 Mar 14;385(9972):946.
]
[
Allemani C, Matsuda T, Di Carlo V, Harewood R, Matz M, Nikšić M, et al. Global surveillance of trends in cancer survival 2000-14 (CONCORD-3): analysis of individual records for 37,513,025 patients diagnosed with one of 18 cancers from 322 population-based registries in 71 countries. Lancet. 2018 Mar 17;391(10125):1023-75. doi: 10.1016/S0140-6736(17)33326-3. Epub 2018 Jan 31.
]
[
Organisation for Economic Co-operation and Development. Organisation for Economic Co-operation and Development [Internet]. Paris: OECD; [cited 2025 Aug 12]. Available from: https://www.oecd.org/en.html.
]
[
European Commission. Country health profiles [Internet]. Luxembourg: European Commission; [cited 2025 Aug 12]. Available from: https://health.ec.europa.eu/state-health-eu/country-health-profiles_en.
]
[
Giusti F, Martos C, Negrão Carvalho R, Van Eycken L, Visser O, Bettio M. Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System. Front Oncol. 2023 Jul 28;13:1219128. doi: 10.3389/fonc.2023.1219128.
]
[
Netherlands Comprehensive Cancer Organisation. Netherlands Cancer Registry [Internet]. Utrecht: IKNL; [cited 2025 Aug 12]. Available from: https://iknl.nl/en/NCR.
]
[
National Cancer Institute. Surveillance, Epidemiology, and End Results Program [Internet]. Bethesda (MD): National Cancer Institute; [cited 2025 Aug 12]. Available from: https://seer.cancer.gov/.
]
[
Löfgren L, Eloranta S, Krawiec K, Asterkvist A, Lönnqvist C, Sandelin K, et al. Validation of data quality in the Swedish National Register for Breast Cancer. BMC Public Health. 2019 May 2;19(1):495. doi: 10.1186/s12889-019-6846-6.
]
[
Allemani C, Sant M, Weir HK, Richardson LC, Baili P, Storm H, et al. Breast cancer survival in the US and Europe: a CONCORD high-resolution study. Int J Cancer. 2013 Mar 1;132(5):1170-81. doi: 10.1002/ijc.27725. Epub 2012 Sep 18.
]
[
Allemani C, Rachet B, Weir HK, Richardson LC, Lepage C, Faivre J, et al. Colorectal cancer survival in the USA and Europe: a CONCORD high-resolution study. BMJ Open. 2013 Sep 10;3(9):e003055. doi: 10.1136/bmjopen-2013-003055. Erratum in: BMJ Open. 2013 Oct 24;3(10):e003055corr1. doi: 10.1136/bmjopen-2013-003055corr1.
]
[
European Commission. Population-based cancer registry data in Europe (EUCANREG) [Internet]. Brussels: European Commission; [cited 2025 Aug 12]. Available from: https://cordis.europa.eu/project/id/772345/reporting.
]
[
Forsea AM. Cancer registries in Europe-going forward is the only option. Ecancermedicalscience. 2016 May 12;10:641. doi: 10.3332/ecancer.2016.641.
]
[
European Commission. Europe’s beating cancer plan [Internet]. Luxembourg: European Commission; 2021 [cited 2025 Aug 12]. Available from: https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf.
]
[
European Cancer Organisation. Inequalities network [Internet]. Brussels: European Cancer Organisation; [cited 2025 Aug 12]. Available from: https://www.europeancancer.org/topic-networks/inequalities.html.
]
[
Zanetti R, Sacchetto L, Coebergh JW, Rosso S. To accelerate cancer prevention in Europe: challenges for cancer registries. Eur J Cancer. 2018 Nov;104:151-9. doi: 10.1016/j.ejca.2018.09.001. Epub 2018 Oct 20.
]
[
EpiCost. EpiCost [Internet]. Rome: EpiCost; [cited 2025 Aug 12]. Available from: https://www.epicost.it/.
]
[
Francisci S, Guzzinati S, Capodaglio G, Pierannunzio D, Mallone S, Tavilla A, et al. Patterns of care and cost profiles of women with breast cancer in Italy: EPICOST study based on real world data. Eur J Health Econ. 2020 Sep;21(7):1003-13. doi: 10.1007/s10198-020-01190-z. Epub 2020 May 12.
]
[
Francisci S, Capodaglio G, Gigli A, Mollica C, Guzzinati S. Cancer cost profiles: the Epicost estimation approach. Front Public Health. 2022 Sep 21;10:974505. doi: 10.3389/fpubh.2022.974505.
]
[
Dal Maso L, Santoro A, Iannelli E, De Paoli P, Minoia C, Pinto M, et al. Cancer cure and consequences on survivorship care: position paper from the Italian Alliance Against Cancer (ACC) Survivorship Care Working Group. Cancer Manag Res. 2022 Oct 31;14:3105-18. doi: 10.2147/CMAR.S380390.
]
[
Toffolutti F, Guzzinati S, De Paoli A, Francisci S, De Angelis R, Crocetti E, et al. Complete prevalence and indicators of cancer cure: enhanced methods and validation in Italian population-based cancer registries. Front Oncol. 2023 Jun 6;13:1168325. doi: 10.3389/fonc.2023.1168325.
]
[
Martos C, Giusti F, Van Eycken L, Visser O. Editorial: joining efforts to improve data quality and harmonization among European population-based cancer registries. Front Oncol. 2024 Oct 9;14:1496574. doi: 10.3389/fonc.2024.1496574.
]
[
Giusti F, Martos C, Carvalho RN, Zadnik V, Visser O, Bettio M, et al. Facing further challenges in cancer data quality and harmonisation. Front Oncol. 2024 Jul 25;14:1438805. doi: 10.3389/fonc.2024.1438805.
]
[
European Parliament, Council of the European Union. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) [Internet]. Official Journal of the European Union; 2016 May 4 [cited 2025 Aug 12]. Available from: https://eur-lex.europa.eu/eli/reg/2016/679/oj/eng.
]
[
Mazzucco W, Stracci F, Gatta G, D’Argenzio A, Bidoli E, Carone S, et al. Cancer registries and data protection in the age of health digital interoperability in Europe: the perspective of the Italian Network of Cancer Registries (AIRTUM). Front Oncol. 2022 Dec 6;12:1052057. doi: 10.3389/fonc.2022.1052057.
]