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


METHODS
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.


RESULTS
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).


CONCLUSIONS
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.
Michel
Gisela
G
Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, Research Group on Child and Adolescent Health, University of Berne, Berne, Switzerland.
von der Weid
Nicolas Xavier
NX
Zwahlen
Marcel
M
Adam
Martin
M
Rebholz
Cornelia Eva
CE
Kuehni
Claudia Elisabeth
CE
D000293:Adolescent; D002648:Child; D002669:Child Welfare; D002675:Child, Preschool; D005260:Female; D006801:Humans; D015994:Incidence; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D009369:Neoplasms / Q000453:epidemiology* / Q000401:mortality; D009373:Neoplasms, Germ Cell and Embryonal / Q000453:epidemiology / Q000209:etiology; D044382:Population Groups; D012042:Registries; D012189:Retrospective Studies; D018570:Risk Assessment; D013534:Survival; D013557:Switzerland / Q000453:epidemiology