European expert consensus on cancer recurrence and progression data collection by population based cancer registries
Year: 2026
Type: article
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.
Source: Cancer Epidemiology
Authors: Sinéad T. Hawkins, Helen J. Mitchell, Damien Bennett, Luigino Dal Maso, Xavier Farré, Francesco Giusti, Karen Graham, Dyfed Wyn Huws, Jennifer Lai, Georgios Lyratzopoulos, Rafael Marcos-Gragera, Carmen Martos, Claire Manson, Irmina Michalek, Eileen Morgan, David Morrison, Mohsen Mousavi, Raquel Negrão Carvalho, Alice Nennecke, Laura Ortelli, Giorgia Randi, Brian Rous, Karen Smith, Maciej Trojanowski, Liesbet Van Eycken, Luciana Neamtiu, Freija Verdoodt, Otto Visser, Thorsten Wicker, Vesna Zadnik, Anna T. Gavin
Institutions: Queen's University Belfast, Centro di Riferimento Oncologico, Agència de Salut Pública de Catalunya, National Health Service, NHS England, Swansea University, Public Health Wales, University College London, Josep Carreras Leukaemia Research Institute, Departament de Salut, Institut Català d'Oncologia, Institut d'Investigació Biomèdica de Girona, European Commission, Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana, Joint Research Centre, Joint Research Centre, Joint Research Centre, Public Health Scotland, The Maria Sklodowska-Curie National Research Institute of Oncology, Centre international de recherche sur le cancer, Piksel (Italy), Greater Poland Cancer Center, Netherlands Comprehensive Cancer Organisation
Language: English
Subfield: Oncology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $3,740
Award: G3228374290
OpenAlex ID: W7151074302