Activities of the Group

The Group is active in a wide range of areas. These include the registration of all cases of childhood cancer (including leukaemia) seen by members of the Group. In 1977 this represented some 43% of all childhood cancers in the UK. In 2004 this is now nearer to 95%. The CCLG has close links with the Childhood Cancer Research Group, University of Oxford, which carries out epidemiological studies of childhood cancer and which is responsible for the National Registry of Childhood Tumours; the majority of these tumours are now registered through the CCLG Data Centre.

The main area of activity of the CCLG is the organisation and running of clinical trials. The Group is responsible for a range of Phase I, II and III studies in all areas of childhood cancer, except leukaemia. Virtually all trials are now run on an international basis, mainly in collaboration with colleagues in Europe. Members of the Group have been the principal coordinators and organisers of a number of major clinical trials, as well as playing a leading role in fostering and expanding international collaboration.

The CCLG has an active New Agents Working Group, now working closely with colleagues in Europe, to bring forward new agents and new therapies through collaborative Phase I trials. This work is enhanced by the creation of a dedicated Pharmacology facility, based at the University of Newcastle upon Tyne.

It is generally accepted that the next major advances in childhood cancer will be as a result of gaining a greater understanding of the biology of the disease. An area of increasing importance for the CCLG is, therefore, biological studies. In order to facilitate these a national Tumour Bank has been established in the UK. This operates on a system of central registration, with tumour material being stored at centres throughout the UK. Coordinated by the CCLG Biological Studies and Pathology Groups, the aim behind the creation of the Tumour Bank is the facilitation of basic scientific research.

As more and more children (currently around 75%) are cured of their disease, so increasing importance is 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 receiving greater attention.

The CCLG is also involved in improving the services and welfare of children and young people with cancer, and their families. In addition, the Group is increasingly becoming recognised as the official national policy group for paediatric oncology services. As the Group's activities and success have increased so its members have inevitably had to become involved in what might be considered more political activities: highlighting the problems of providing such services throughout the country in a uniform way and obtaining appropriate funding and staffing for the centres. A number of reports have been produced over recent years concerning the appropriate provision of cancer services and for manpower purposes, and the Group is now increasingly consulted on all childhood cancer matters by a range of organisations. In December 1997 a joint CCLG and SBNS (Society of British Neurological Surgeons) document ‘Guidance for Services for Children and Young People with Brain and Spinal Tumours’ was published.

The CCLG Parents Guide to Children’s Cancers, produced in collaboration with Cancerbackup, is available through the Data Centre. The booklet is issued free of charge to all centres, patients and their families.

In December 1998 the CCLG launched Contact, a new national magazine for childhood cancer families. This magazine, which is produced quarterly, is now a collaborative venture with the National Alliance of Childhood Cancer Parents Organisations (NACCPO). The aims of Contact are to provide information and to help reduce the sense of isolation felt by many patients and their families. In a short space of time the magazine has achieved considerable success, helping to reinforce the strong links which exist between professionals and parents/parent and other support organisations.

In 2003 a Siblings Project Group was formed, initially producing information for siblings but now with an expanded remit.