About the Project
Development of Proposals for Future Research Projects
The objectives of the pilot project are to develop study protocols based on the conclusions of the network meetings, in order to provide new strategies for future investigations of childhood leukaemia. One of the main aims is to provide ways in which to not only further our knowledge and understanding of the disease but also, importantly, establish a framework in low-resource countries by which to provide help in dealing with the burden of the disease. To achieve these goals, a series of distinct, yet complementary, proposals, each with its own aims and objectives and time scales for completion, are currently being put together. The delivery of such a programme of work requires intrinsic knowledge and hands-on experience of the challenges that childhood leukaemia poses in different parts of the world.
One proposal aims to extend the achievements of the pilot project by formalizing the network and by reviewing its composition to ensure that it does provide the level of global representation required to undertake future work. Other proposals are very much targeted towards trying to more accurately determine the incidence and outcomes of childhood leukaemia by conducting detailed investigations at specific centres with reliable demographic data, and by using online data entry programs to facilitate global data collection and real-time data capture from participating centres over a two-year period. Additional features of these proposals are to investigate leukaemia subtypes, as well as patterns in relation to age and sex, and to collect detailed information throughout the patient pathway, as well as biospecimens wherever possible. Another proposal is focused on disease outcome and the development of new protocols for use in low-income countries. This will also involve establishing twinning arrangements between centres for diagnosis and treatment and providing educational support and resources for centres and families.