The European Journal of Cancer Prevention special issue on ‘Joining forces for better cancer registration in Europe’: achievements and perspectives

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Cancer registration in Europe originated at the national level in the first half of the 20th century in Denmark. Since then, the process has undergone considerable expansion both in geographic terms as well as in its overall scope (from the basic initial incidence indicators to survival and clinical outcomes). Cancer registration is a key component of ‘big data’ in oncology and has become an important instrument for aetiological and epidemiological research at the population level.
In October 2016 the European Network of Cancer Registries (ENCR) and the European Commission’s Joint Research Centre (JRC) organized the 2016 ENCR Scientific Meeting and General Assembly with the theme: ‘Joining forces for better cancer registration in Europe’. Approximately 170 European cancer-registry representatives joined the event, contributing with 36 oral and 50 poster presentations. To mark the importance of this event, the JRC together with the ENCR decided to request publication of a special issue of the European Journal of Cancer Prevention (EJCP) focused on cancer registration in Europe, selecting some of the contributions of the scientific conference.
This special issue presents a snapshot of the wide range of cancer registries’ activities in Europe and includes examples of the descriptive and analytical studies currently being carried out with cancer-registry data.
The opening article focuses on the substantial and long-term effort of Germany in integrating its regional population-based cancer registries already in place to a nationwide implementation of clinical cancer registries (Holleczek and Katalinic, 2017). Within this strategy, half of the German states are already setting up comprehensive cancer registries integrating the tasks of both clinical and population-based cancer registries. Several methodological issues still remain to be resolved, including standards on data collection, processing and utilization to reach uniform top-quality standards.
The EJCP special issue also includes the first evaluation of case-ascertainment completeness in the whole of Switzerland (Lorez et al., 2017). By applying two innovative approaches, the authors report satisfactory levels of completeness across all Swiss registries.
A paper from Estonia (Paapsi et al., 2017) evaluates the impact of case under-reporting in childhood cancer estimates for incidence and survival in the calendar period 2000–2011. The estimated overall completeness of 89.5% is reflected in considerable underestimation for both incidence and survival measures, mostly because of the exclusion of nonfatal childhood cancer cases.
Two other papers propose ad hoc statistical methods applied to cancer registration data. One addresses the validation of incidence rates in an Italian region not fully covered by registration (Nannavecchia et al., 2017). The method uses neighbouring incidence data, adjusting for hospitalization and mortality. The second estimates the population-based cancer-specific potential years of life lost in a cohort of cancer patients from Belgium and proposes a method applicable when accurate information on the cause of death is not available (Silversmit et al., 2017). The authors report on how the cancer-specific fraction of the potential years of life lost increases with increasing cancer-specific mortality and decreasing age at diagnosis.
A number of papers report on cancer incidence, survival and end-outcome trends in different European geographic areas.
Solans et al. (2017) describe the changes in the incidence and survival of Hodgkin lymphoma in Girona (Spain) over three decades, considering stage of diagnosis, histological subtype and presence of B-symptoms, that is, systemic symptoms of fever, nocturnal sweats and weight loss. They find constant Hodgkin lymphoma incidence throughout the period, and lower survival for patients with older age at diagnosis, higher clinical stage and presence of B-symptoms.
Antunes et al. (2017) report on cancer survival trends for the first decade of the millennium in the northern region of Portugal, focusing on the 20 cancer sites with the highest incidence.

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