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.

Validity or accuracy refers to the proportion of cases with specific characteristics that actually have such attribute. Completeness indicates the extent of which all incident cancer cases in the area covered by the PBCR are indeed recorded by the PBCR. Comparability is the adherence to common international guidelines. Timeliness refers to how quickly cancer incidence data is collected, processed and reported. There is usually a trade-off between timeliness and both completeness and validity.

The European Network of Cancer Registries (ENCR) has been operating since 1990 to support the collaboration among European PBCRs. One of the ENCR main aims is the improvement of the quality and comparability of cancer incidence data. The ENCR Secretariat has been hosted in Ispra, Italy, since 2012 by the Directorate-General Joint Research Centre (JRC), the science and knowledge centre of the European Commission. The JRC supports the ENCR in the harmonisation of PBCR data, with the goal of accurately comparing data between European areas.

In 2015 a first ENCR-JRC data call was launched by the ENCR Steering Committee and the JRC to the European PBCRs. After harmonisation, EU-wide statistics on incidence and mortality by cancer site, sex, age group and PBCR have been computed, feeding the European Cancer Information System (ECIS) as the web tool developed and maintained by the JRC to report on the burden of cancer in EU and Europe.

Incidence and mortality data from 130 European general PBCRs (collecting data for all ages and all tumours), contributing to the ECIS through the 2015 ENCR-JRC data call were selected for patients older than 19 years. Validity, completeness, and timeliness of the PBCRs datasets were evaluated. Results show that 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 could be detected across European PBCRs.

The harmonisation of PBCR’ data as the input source for the assessment of cancer burden is one of the main aims of the support provided by the JRC to the ENCR to strengthen the basis for monitoring the cancer burden. In order to improve data quality and harmonisation, the JRC and the ENCR have been carrying out several activities along the years, namely the set-up of yearly training agendas and organisation of trainings, the coordination of thematic Working Groups to draft guidelines and recommendations on data coding, the development and provision of common rules and related validation software to check data compliance to agreed EU-wide standards. In this context, the results reported in this paper are to be interpreted as the baseline for monitoring PBCRs data quality indicators in Europe along time.

Full online article - Quality indicators, Frontiers in Oncology

ECIS - European Cancer Information System

The European Network of Cancer Registries (ENCR)

Incidence and mortality estimates for 25 major cancers across European Union (EU-27) for the year 2020, KCC news 16.12.2021