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Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System

Population-based Cancer Registries (PBCRs) are tasked with collecting high-quality data, important for monitoring cancer burden and its trends, planning and evaluating cancer control activities, clinical and epidemiological research and development of health policies. The main indicators to measure...

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Autores principales: Giusti, Francesco, Martos, Carmen, Negrão Carvalho, Raquel, Van Eycken, Liesbet, Visser, Otto, Bettio, Manola
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10421659/
https://www.ncbi.nlm.nih.gov/pubmed/37576881
http://dx.doi.org/10.3389/fonc.2023.1219128
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author Giusti, Francesco
Martos, Carmen
Negrão Carvalho, Raquel
Van Eycken, Liesbet
Visser, Otto
Bettio, Manola
author_facet Giusti, Francesco
Martos, Carmen
Negrão Carvalho, Raquel
Van Eycken, Liesbet
Visser, Otto
Bettio, Manola
author_sort Giusti, Francesco
collection PubMed
description Population-based Cancer Registries (PBCRs) are tasked with collecting high-quality data, important for monitoring cancer burden and its trends, planning and evaluating cancer control activities, clinical and epidemiological research and development of health policies. The main indicators to measure data quality are validity, completeness, comparability and timeliness. The aim of this article is to evaluate the quality of PBCRs data collected in the first ENCR-JRC data call, dated 2015. METHODS: All malignant tumours, except skin non-melanoma, and in situ and uncertain behaviour of bladder were obtained from 130 European general PBCRs for patients older than 19 years. Proportion of cases with death certificate only (DCO%), proportion of cases with unknown primary site (PSU%), proportion of microscopically verified cases (MV%), mortality to incidence (M:I) ratio, proportion of cases with unspecified morphology (UM%) and the median of the difference between the registration date and the incidence date were computed by sex, age group, cancer site, period and PBCR. RESULTS: A total of 28,776,562 cases from 130 PBCRs, operating in 30 European countries were included in the analysis. The quality of incidence data reported by PBCRs has been improving across the study period. Data quality is worse for the oldest age groups and for cancer sites with poor survival. No differences were found between males and females. High variability in data quality was detected across European PBCRs. CONCLUSION: the results reported in this paper are to be interpreted as the baseline for monitoring PBCRs data quality indicators in Europe along time.
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spelling pubmed-104216592023-08-12 Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System Giusti, Francesco Martos, Carmen Negrão Carvalho, Raquel Van Eycken, Liesbet Visser, Otto Bettio, Manola Front Oncol Oncology Population-based Cancer Registries (PBCRs) are tasked with collecting high-quality data, important for monitoring cancer burden and its trends, planning and evaluating cancer control activities, clinical and epidemiological research and development of health policies. The main indicators to measure data quality are validity, completeness, comparability and timeliness. The aim of this article is to evaluate the quality of PBCRs data collected in the first ENCR-JRC data call, dated 2015. METHODS: All malignant tumours, except skin non-melanoma, and in situ and uncertain behaviour of bladder were obtained from 130 European general PBCRs for patients older than 19 years. Proportion of cases with death certificate only (DCO%), proportion of cases with unknown primary site (PSU%), proportion of microscopically verified cases (MV%), mortality to incidence (M:I) ratio, proportion of cases with unspecified morphology (UM%) and the median of the difference between the registration date and the incidence date were computed by sex, age group, cancer site, period and PBCR. RESULTS: A total of 28,776,562 cases from 130 PBCRs, operating in 30 European countries were included in the analysis. The quality of incidence data reported by PBCRs has been improving across the study period. Data quality is worse for the oldest age groups and for cancer sites with poor survival. No differences were found between males and females. High variability in data quality was detected across European PBCRs. CONCLUSION: the results reported in this paper are to be interpreted as the baseline for monitoring PBCRs data quality indicators in Europe along time. Frontiers Media S.A. 2023-07-28 /pmc/articles/PMC10421659/ /pubmed/37576881 http://dx.doi.org/10.3389/fonc.2023.1219128 Text en Copyright © 2023 Giusti, Martos, Negrão Carvalho, Van Eycken, Visser and Bettio https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Oncology
Giusti, Francesco
Martos, Carmen
Negrão Carvalho, Raquel
Van Eycken, Liesbet
Visser, Otto
Bettio, Manola
Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System
title Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System
title_full Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System
title_fullStr Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System
title_full_unstemmed Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System
title_short Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System
title_sort quality indicators: completeness, validity and timeliness of cancer registry data contributing to the european cancer information system
topic Oncology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10421659/
https://www.ncbi.nlm.nih.gov/pubmed/37576881
http://dx.doi.org/10.3389/fonc.2023.1219128
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