Children's Cancer and Leukaemia Group
The Children’s Cancer and Leukaemia Group is an organization focused on childhood cancer. The organization was formed on 1 August 2006, as a result of the merger of the United Kingdom Children's Cancer Study Group (UKCCSG) and the UK Childhood Leukaemia Working Party (UK CLWP).
The United Kingdom Children's Cancer Study Group had been founded in 1977 when a number of paediatricians who had been treating children with cancer joined together to form a national group. The UK Childhood Leukaemia Working Party was formed around the same time. From small beginnings, there has been steady expansion so that CCLG now has over 600 members, working in a network of 21 Paediatric Oncology Centres throughout the United Kingdom and Ireland, and including over 70 corresponding members from other countries around the world. Membership of the Group is multidisciplinary and includes clinicians, pathologists, epidemiologists, basic scientists and representatives of other disciplines.
The aims of the CCLG are to advance the study of childhood cancer, facilitate collaborative research and clinical trials and improve standards of care for children and young people with cancer.
The main area of activity is the coordination of clinical trials. The Group is responsible for a range of studies in all areas of childhood cancer. Virtually all trials are now run on an international basis, mainly in collaboration with colleagues in Europe. Members of the Group have played a leading role in a number of major clinical trials, as well as in fostering and expanding international collaboration. Forty years ago only about 20% of children diagnosed with cancer survived. Currently approximately 75% are cured of their disease, and increasing importance is now being placed on investigations of the late effects of treatment, and the long-term effects of the disease. Quality of life and psychosocial issues for survivors, as well as children and young people undergoing treatment, are also a major focus. There remain major challenges, however, for those tumour types where the prognosis remains poor.
Apart from coordination of clinical trials, CCLG is also involved in the coordination of a national tumour bank, designed to support and facilitate biological studies, which will lead to greater understanding of the disease and hopefully help us to improve treatment in future.
Childhood cancer is relatively rare, with only around 1700 new cases a year up to age 15. It is essential that children are treated in specialist centres and this is possible through the network of 21 treatment centres. It is also essential that appropriate support is provided to families, and we work increasingly closely with parent and other support organizations. In 1998 Contact, a national magazine for childhood cancer families, was launched. The aims of Contact are to provide information and to help reduce the sense of isolation felt by many patients and their families. Since then a range of booklets aimed at patients and families have also been produced, including information for siblings and grandparents. (Contact and all publications can be downloaded from www.childcancer.org.uk)
Funding to support the work of the Group comes mainly from short-term grants, awarded following rigorous scientific review, and from a number of grant awarding bodies. There is no permanent funding source. CCLG is, however, also a registered charity (Charity no. 286669) and donations to the charity are vital in supplementing the grant income. Donations can be ring-fenced to support research into particular tumour types.
All of the activities of the CCLG are coordinated through the Data Centre which is part of the University of Leicester, and managed by the Executive Director.