Systematic research relating to the follow-up of survivors of cancer when young in the UK: methods and selected results

The British Childhood Cancer Survivor Study (BCCSS) comprises 18,000 individuals diagnosed with cancer before aged 15 years, between 1940 and 1991, in Britain, who survived at least 5 years from diagnosis. This will be extended to eventually include 40,000 5-year survivors of childhood cancers diagnosed between 1940 and 2010 in Britain. Studies of late mortality, subsequent primary cancers and non-neoplastic morbidity are undertaken using national registries for death and cancer, questionnaire surveys and linkage to hospital episode statistics (for publications see www.bccss.bham.ac.uk). The Teenage and Young Adult Cancer Survivor Study comprises 300,000 individuals diagnosed with cancer when aged 15 to 39 years, in England and Wales, between 1971 and 2006; 170,000 survived at least 5 years from diagnosis and will be investigated using methodology used in the BCCSS. The BCCSS will contribute towards the PanCareSurFup a 5-year programme grant funded by the European Commission and involving most European countries. Such large population-based investigations produce reliable, unbiased and comprehensive evidence providing a rational basis for many clinical and policy decisions.