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In november 2017 in Brussels, the kick-off meeting of COST Action LEGEND (LEukaemia GENe Discovery by data sharing, mining and collaboration) was held. On behalf of the Princess Máxima Center, Dr Esmé Waanders leads this project involving child psychologists, geneticists and other scientists from several countries in Europe and abroad. The project was an initiative of the International BFM Genetic Variation task force (I-BFM GV-Task Force) and will last four years. The results of the Action will have significance for all children in Europe and abroad. It contributes significantly to the mission of the Princess Máxima Center: healing every child with cancer, with optimal quality of life.

Acute lymphocytic leukemia and lymphoma in childhood account for about 30% of all types of childhood cancer. Unfortunately, the causes of these types of childhood cancer are still largely unknown. In order to learn as much of these patients as possible, international cooperation between leukemia and lymphoma experts is crucial.

Underlying genetic causes
The main research question in this Action is: How often do children with leukemia and lymphoma have an underlying genetic aptitude or sensitivity to develop leukemia? In other words, how often is it actually a hereditary form of the disease and what then is causing it? The purpose of this COST Action is to combine all international efforts in this area and to establish close cooperation between the participating groups in order to study the necessary patient numbers and enable exchange in genetics, cell biology and statistics. The Action will bring together facilities, expertise and rare patient cohorts that increase the common ability to identify low/medium risk genetic variants and to identify rare high risk variants. The Action provides crucial support for new collaborative research that will directly affect clinical management, monitoring and support of patients/families and counseling for reproductive planning.

Rare cases
The Action focuses on rare cases of syndrome-associated or familial leukemia and lymphoma. ‘Only as a group we can learn more about this in a meaningful way,’ says Esmé Waanders. ‘Some participating countries have a large number of patients, but no optimal research infrastructure, while other countries are well-equipped, but have few patients. The network brings together these extremes, creating a productive research environment. In addition, the combination of expertise and technology from multiple research disciplines will result in a comprehensive approach to our research questions.’

Three stages
Each working group in the Action will follow three phases: discovery, implication and application. During the discovery phase, the Action will focus on finding new variants related to the development of leukemia/lymphoma or to adverse effects of their treatment. In the implication phase, the Action will study the function of new and known variants in oncogenic pathways and their effect on phenotype and disease progression. In the application phase, the Action studies improvements in clinical diagnosis, treatment and screening regimes, as well as psychosocial aspects.

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