European expert consensus on cancer recurrence and progression data collection by population based cancer registries

BACKGROUND: As cancer survival improves, the risk of recurrence and progression (RP) places increasing demands on services. Population based cancer registries (PBCR) recognise the importance of recording these data items and seek defined standardised variables for routine collection of RP events. METHODS: Experts from 14 European countries under direction of the European Network of Cancer Registries (ENCR) defined RP for solid and haematological malignancies, standardised variables and coding formats for PBCRs. A seven-step modified-nominal group technique was used. A survey of RP data recording in 2023, an ENCR workshop in 2023 which included wider representation than from Europe and consultation with all ENCR members followed. RESULTS: Definitions were agreed with a tiered approach to data collection and guidance prepared: Cancer recurrence defined as cancer return after a disease-free period post tumour-reductive treatment (TRT) where cancer had a complete clinical or microscopic treatment response. Cancer progression - an increased disease load post TRT where a verified complete response was not achieved. Transformation where tumour changes from indolent to aggressive is covered in RP definitions. Survey responses indicated 31% of PBCRs collect data on RP for all cancer sites 11% for selected sites. Many identified additional resources, training and better access to clinical data required to collect RP data. Guideline implementation began January 2025 irrespective of primary diagnosis date. CONCLUSION: RP data, standardised and collected by adequately resourced PBCRs, is a key step in quantifying service needs and outcomes of this increasing group of cancer patients. Registries need adequate resources to collect RP data.

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Publication Details

Journal
Cancer Epidemiology
Published
2026-04-07
DOI
https://doi.org/10.1016/j.canep.2026.103067
Primary Topic
Global Cancer Incidence and Screening
Type
article
Field-Weighted Citation Impact
0.00

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article

European expert consensus on cancer recurrence and progression data collection by population based cancer registries

Brian Rous, Alice Nennecke, Luigino Dal Maso, Luciana Neamţiu et al.
Cancer Epidemiology
Global Cancer Incidence and Screening
article

European expert consensus on cancer recurrence and progression data collection by population based cancer registries

Brian Rous, Alice Nennecke, Luigino Dal Maso, Luciana Neamţiu, Laura Ortelli, Freija Verdoodt, Otto Visser, Liesbet Van Eycken, Maciej Trojanowski, Sinéad Teresa Hawkins, Irmina Maria Michałek, Dyfed Huws, Francesco Giusti, Georgios Lyratzopoulos, Giorgia Randi, Helen J. Mitchell, Mohsen Mousavi, Xavier Farré, Karen Graham, Karen Smith, Raquel Negrão Carvalho, Carmen Martos, Anna T. Gavin, Jennifer Lai, Eileen Morgan, Thorsten Wicker, David Morrison, Damien Bennett, Vesna Zadnik, Rafael Marcos-Gragera, Claire Manson
article en

Abstract

BACKGROUND: As cancer survival improves, the risk of recurrence and progression (RP) places increasing demands on services. Population based cancer registries (PBCR) recognise the importance of recording these data items and seek defined standardised variables for routine collection of RP events. METHODS: Experts from 14 European countries under direction of the European Network of Cancer Registries (ENCR) defined RP for solid and haematological malignancies, standardised variables and coding formats for PBCRs. A seven-step modified-nominal group technique was used. A survey of RP data recording in 2023, an ENCR workshop in 2023 which included wider representation than from Europe and consultation with all ENCR members followed. RESULTS: Definitions were agreed with a tiered approach to data collection and guidance prepared: Cancer recurrence defined as cancer return after a disease-free period post tumour-reductive treatment (TRT) where cancer had a complete clinical or microscopic treatment response. Cancer progression - an increased disease load post TRT where a verified complete response was not achieved. Transformation where tumour changes from indolent to aggressive is covered in RP definitions. Survey responses indicated 31% of PBCRs collect data on RP for all cancer sites 11% for selected sites. Many identified additional resources, training and better access to clinical data required to collect RP data. Guideline implementation began January 2025 irrespective of primary diagnosis date. CONCLUSION: RP data, standardised and collected by adequately resourced PBCRs, is a key step in quantifying service needs and outcomes of this increasing group of cancer patients. Registries need adequate resources to collect RP data.

Cancer EpidemiologyVol. 102
Queen's University Belfast (GB), University of Perugia (IT), European Commission (BE), European CanCer Organisation (BE), Institute of Oncology Ljubljana (SI), Piksel (Italy) (IT), Public Health Wales (GB), Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana (ES), Outcomes Based Healthcare (GB), Swiss Cancer League (CH), Greater Poland Cancer Center (PL), Institut d'Investigació Biomèdica de Girona (ES), Public Health Scotland (GB), National Cancer Registry (IE), The Northern Ireland Cancer Centre (GB), University Cancer Center Hamburg (DE), Centro di Riferimento Oncologico (IT), Netherlands Comprehensive Cancer Organisation (NL), The Maria Sklodowska-Curie National Research Institute of Oncology (PL), Istituti di Ricovero e Cura a Carattere Scientifico (IT), National Cancer Registration Service (GB), Centre international de recherche sur le cancer (FR), NHS England, University College London (GB), University for Foreigners Perugia (IT)
European Commission, Public Health Agency, Associazione Italiana per la Ricerca sul Cancro
Openalex Percentile: Top 32%
Global Cancer Incidence and Screening
DOIOpen Access PDFOpenAlex
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