The South West Childhood Cancer Research Registry (SWCCRR) is a research resource which contains the records of more than 3,500 children and young people treated for cancer (including leukaemia and other related diagnoses) in the South West of England since 1967.
Although data collection is not yet completely population based, the registry includes records of the great majority of cases of cancer occurring in children up to the age of 16 years within the South West Paediatric Oncology Shared Care Network. This clinical network, focused on the principal treatment centre at the Bristol Royal Hospital for Children (United Bristol Healthcare Trust), coordinates the care of children and young people with cancer from Gloucestershire to Cornwall and principally takes referrals of patients across three of the thirty four cancer networks in England (The Three Counties Cancer Network, Avon Somerset and Wiltshire Cancer Network, and the Peninsula Cancer Network). SWCCRR collaborates with the South West Cancer Intelligence Service (SWCIS - part of the South West Public Health Observatory) and is an Associate Member of the United Kingdom Association of Cancer Registries (UKACR).
The registry provides reports detailing patterns of diagnosis and referral, survival rates and long term follow up. Since 2006, SWCCRR has included a tumour bank function which enables a link between registry records and the availability of samples of tumour and normal tissue stored for research purposes. The tumour bank software records details of consent, collection, storage and utilisation of biological samples, in order to facilitate ethically approved research designed to help understand more about the biological mechanisms involved in cancer and its treatment
The activities of SWCCRR are managed by a Board of Directors, chaired by Professor MCG Stevens, CLIC Professor of Paediatric Oncology at the University of Bristol.