title: Registration of childhood cancer: Moving towards pan-European coverage?
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.
authors.affiliation: Section of Cancer Surveillance, International Agency for Research on Cancer, Lyon, France. Electronic address: steliarova@iarc.fr.
authors.forename: Eva
authors.initials: E
authors.lastname: Steliarova-Foucher
authors.affiliation: Childhood Cancer Research Group, University of Oxford, Oxford, UK.
authors.forename: Charles
authors.initials: C
authors.lastname: Stiller
authors.affiliation: Section of Cancer Surveillance, International Agency for Research on Cancer, Lyon, France.
authors.forename: Murielle
authors.initials: M
authors.lastname: Colombet
authors.affiliation: German Childhood Cancer Registry, University Medical Centre, Mainz, Germany.
authors.forename: Peter
authors.initials: P
authors.lastname: Kaatsch
authors.affiliation: Piedmont Cancer Registry, Centre for Cancer Prevention, Torino, Italy.
authors.forename: Roberto
authors.initials: R
authors.lastname: Zanetti
authors.affiliation: Spanish Registry of Childhood Tumours (RETI-SEHOP), University of Valencia, Valencia, Spain.
authors.forename: Rafael
authors.initials: R
authors.lastname: Peris-Bonet
mesh_terms: D000293:Adolescent; D017668:Age of Onset; D002648:Child; D002675:Child, Preschool; D005060:Europe / Q000453:epidemiology; D005062:European Union / Q000458:organization & administration / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D009369:Neoplasms / Q000453:epidemiology*; D017410:Practice Guidelines as Topic; D012042:Registries / Q000592:standards / Q000706:statistics & numerical data; D014944:World Health Organization
keywords: Childhood cancer; Coverage; Europe; Population based cancer registries