The Centre for Childhood Cancer Survivor Studies was established in 1998 by the current Director, Professor Mike Hawkins, with quinquennial Programme Grant funding from Cancer Research UK and the Kay Kendall Leukaemia Fund to carry out the British Childhood Cancer Survivor Study.
The British Childhood Cancer Survivor Study (BCCSS) is the first national population-based study of survivors of childhood cancer to be undertaken in Britain which assesses a wide spectrum of possible adverse health outcomes of childhood cancer and its treatment. It is based on an underlying cohort of 17981 individuals who were diagnosed with childhood cancer between 1940 and 1991 in Britain and survived at least 5 years.
UK General Data Protection Regulations require that individuals are informed fairly and transparently of the use of their data. The Centre for Childhood Cancer Survivor Studies (CCCSS) has provided the following material:
- Privacy Notice: How the CCCSS deals with personal data
- Patient Notification Document: Reasons for research, why individuals are included in research and rights of data subjects
- Study Protocol: Detailed background to research, including how research is undertaken and how results are published