Abstract Cancer is relatively rare in childhood, but it contributes considerably to childhood mortality, years of life lost per person and late effects in survivors. Large populations need to be covered to set up meaningful studies of these rare conditions. Cancer registries ensure cancer surveillance, thus providing the basis for research as well as policy decisions. In this paper we examine coverage of childhood population by cancer registries in Europe and encourage national cancer registration. Over 200 cancer registries in various stages of development were identified as collecting data on childhood cancer patients in Europe. They cover 52% of the childhood population in the World Health Organisation (WHO) European region and 83% in the European Union (EU). More than 80% of this coverage is ensured by nationwide data collection, which is ongoing in 29 European countries. Overall coverage of the childhood population could increase to around 98%, if the recently established cancer registries start producing results and others improve their quality and dissemination plans. Paediatric cancer registries are being established with increasing frequency even in the areas covered by general cancer registries, and they tend to be national. Compared with regional registration, national cancer registries are more cost-effective, record larger number of cases, they can achieve higher completeness, less biased incidence and survival estimates and they are conditioned for national and international research. National registration of childhood cancer should be the rule in Europe, so that accurate regional, nation-wide and international statistics can provide solid baselines for research, clinical practice and public health policy. Governmental support and stakeholders' involvement are indispensable to guarantee optimal data quality and completeness.
Bibliographical noteFunding Information:
The Spanish Registry of Childhood Tumours (RETI-SEHOP) has the support of the Ministerio de Sanidad Servicios Sociales e Igualdad of the Spanish Government. The RETI-SEHOP has also benefited of funds from the Enriqueta Villaveccia Foundation and the Foundation of the Spanish Paediatric Association and is a member of the Spanish Network of Research on Cancer (RTICC: RD 12/0036/0053).
During the period of this research, the Childhood Cancer Research Group received funding from Children with Cancer UK and the National Cancer Intelligence Network. The views expressed here are those of the authors, and not necessarily those of Children with Cancer UK, the National Cancer Intelligence Network or Public Health England.
The research leading to these results has received funding from the European Union’s Seventh Framework Programme (FP7/2007–2013) under Grant agreement LSSH–CT–2008–21 9453 (EUROCOURSE) and the Grant agreement 261743 (ENCCA).
© 2015 Elsevier Ltd.
- Childhood cancer
- Population based cancer registries