The Swiss Childhood Cancer Registry: rationale, organisation and results for the years 2001-2005

Childhood cancer is a rare but severe disease. Therefore central registration of all cases is essential for surveillance and management. This paper describes the methodology and basic results of the Swiss Childhood Cancer Registry (SCCR). The SCCR was established in 1976, originally as a national ho...

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Bibliographic Details
Published in:Swiss medical weekly 2007-09, Vol.137 (35-36), p.502-509
Main Authors: Michel, Gisela, von der Weid, Nicolas Xavier, Zwahlen, Marcel, Adam, Martin, Rebholz, Cornelia Eva, Kuehni, Claudia Elisabeth
Format: Article
Language:English
Subjects:
Adolescent
Child
Child Welfare
Child, Preschool
Female
Humans
Incidence
Infant
Infant, Newborn
Male
Neoplasms - epidemiology
Neoplasms - mortality
Neoplasms, Germ Cell and Embryonal - epidemiology
Neoplasms, Germ Cell and Embryonal - etiology
Population Groups
Registries
Retrospective Studies
Risk Assessment
Survival
Switzerland - epidemiology
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Summary:Childhood cancer is a rare but severe disease. Therefore central registration of all cases is essential for surveillance and management. This paper describes the methodology and basic results of the Swiss Childhood Cancer Registry (SCCR). The SCCR was established in 1976, originally as a national hospital-based registry of childhood malignancies. All 9 paediatric oncology-haematology clinics in Switzerland provide baseline and follow-up information on all children diagnosed with cancer. These data are registered centrally and diagnoses are coded according to the International Classification of Childhood Cancer. From 2001-2005, 887 cases of childhood cancer in Swiss residents under the age of 15 years were registered in the SCCR. Of these, 281 (31.7%) were leukaemias, 223 (24.0%) were CNS tumours, and 116 (13.1%) were lymphomas. The age-standardised annual incidence per 1 Million person-years (age below 15 years; world standardisation) was 154.0 (95% CI 143.7-164.3; N = 887). The incidence was higher for boys (170.2, 155.0-185.4; N = 501) than for girls (136.9, 123.0-150.8; N = 386). The close collaboration between all paediatric oncologists-haematologists in Switzerland and a university department allowed the creation of a national population-based cancer registry with detailed clinical information. The SCCR produces cancer type specific incidence and survival estimates and allows the development of nested research projects on childhood cancer aetiology, management and outcome, both on a national and on an international level.
ISSN:1424-7860