Call for data

Overview

A call for data was officially launched in 2011, with the aim of supplementing the ACCIS database with records from new registries or additional calendar years up to 2008 and beyond, according to the possibilities of the participating cancer registries. Over the period needed for data reception, validation, and evaluation, the registries extended their period of coverage to 2009 on average, but many of them are currently striving to provide data for further calendar years, up to 2012. So far, data have been received from 142 cancer registries, covering almost 3,000 million person-years and 400,000 cases of incident cancer. Preliminary analyses are under way, with the aim of publishing the first results in early 2016.

The relevant portions of the collected data are also being fed into the database of another project, International Incidence of Childhood Cancer, Volume 3 (IICC-3), if the contributing registries wish to do so.

To ensure comparability of data on childhood cancer collected across Europe, the submitted datasets should satisfy a number of criteria on selection of cases and quality of collected data, based on international standards.

An internal edition of the CHILD-CHECK program, based on ICD-O-3 [2], is used for data verification. Data are classified using the International Classification of Childhood Cancer, 3rd edition [8]. A number of routine checks enable the standardized comparison of quality indicators, such as proportion of cases with microscopic verification, proportion of cases registered from death certificate only, proportion of unspecified cases, and lists of rare or unlikely cancers. Registries are also asked to respond to questions about the cancer incidence patterns and time trends observed in their data and the practices used to register specific groups of tumours, such as non-malignant central nervous system (CNS) tumours or non-melanoma skin cancers. Population data are also examined for consistency, and registries are asked about mutual data exchange.