Abstract
In collaboration with 62 population-based cancer registries contributing to the Automated
Childhood Cancer Information System (ACCIS), we built a database to study incidence
and survival of children and adolescents with cancer in Europe. We describe the methods
and evaluate the quality and internal comparability of the database, by geographical
region, period of registration, type of registry and other characteristics. Data on
88,465 childhood and 15,369 adolescent tumours registered during 1978–1997 were available.
Geographical differences in incidence are caused partly by differences in definition
of eligible cases. The observed increase in incidence rates cannot be explained by
biases due to the selection of datasets for analyses, and only partially by the registration
of non-malignant or multiple primary tumours. Part of the observed differences in
survival between the regions may be due to variable completeness of follow-up, but
most is probably explained by resource availability and organisation of care. Further
standardisation of data and collection of additional variables are required so that
this study may continue to yield valuable results with reliable interpretation.
Keywords
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