CA16223 - LEukaemia GENe Discovery by data sharing, mining and collaboration (LEGEND)

Childhood acute lymphoblastic leukaemia and lymphoma account for ~30% of all childhood cancers, but the causes remain largely unknown. Recently, both low and high impact genetic risk factors for familial and non-familial childhood leukaemia/lymphoma have been identified. Studying patients with distinct rare genetic predisposition to leukaemia/lymphoma is crucial, because the underlying biologic mechanisms are likely to be relevant for leukaemogenesis and lymphomagenesis in general. Depending on the mutated pathways in patients with genetic predisposition, patients may need an adapted treatment strategy because of poor treatment response and/or increased risk of severe toxicities. . Moreover, knowledge of genetic predisposition is of interest for relatives at risk. To learn as much as possible from and for these patients, international collaboration between leukaemia and lymphoma experts is crucial. Accordingly, this Action consisting of paediatric oncologists, geneticists, and scientists from multiple countries in- and outside Europe will meet on a regular basis to exchange research strategies and to establish joint research projects and therapeutic activities addressing patients with leukaemia/lymphoma predisposition. Due to improving and less costly genome and epigenome mapping technologies, the field is rapidly changing, and we foresee that through the proposed collaboration we can strengthen our expertise in the areas of leukaemia/lymphoma aetiology, biology, epidemiology, treatment, toxicity risk management, counselling, and psychological impact in a highly significant manner. This international application is a first step in order to promote these broad and critical activities that will be crucial for childhood leukaemia/lymphoma research and improved health care.