The European LeukemiaNet (ELN), an EU-funded organisation of physicians, scientists and patients with an interest in leukaemia, has an important goal: the successful treatment of leukaemia. This goal is shared by the pharmaceutical company Novartis. The EUTOS for CML (European Treatment and Outcome Study) agreement on improving the treatment of and knowledge about chronic myeloid leukaemia (CML), which was established and signed three years ago, has just been extended for a further two years. Novartis, who invested an initial 14 million euros in the project in 2007, will now invest another 6 million euros in the already successful project.
By renewing their collaboration, ELN and Novartis have set themselves even greater goals than before, including being able to treat chronic myeloid leukaemia “using less invasive therapies than bone marrow transplantation” or “using drug therapies”, something that, from today’s standpoint, seems attainable. A new project called “Path to Cure” has been established with exactly this goal in mind.When the initiator of the project, the CML study group, was established in 1982, the median survival rate of CML patients was only between three and four years. Nowadays, the median survival rate of CML patients is similar to that of healthy people thanks to the activities of the European LeukemiaNet and the development and use of Novartis’ drug imatinib in particular. Imatinib acts by specifically inhibiting a number of tyrosin kinase enzymes in cancer cells, thereby preventing cancers from proliferating. New, even more targeted therapies such as nilotinib – a drug also developed by Novartis – arose from the agreement between the two partners aimed at further improving the prospect of CML patients in the future, with the ultimate goal of being able to cure the disease.The partners are aiming to implement and enlarge the existing ENL CML patient registry, which is at the core of the EUTOS project. This database is the first of its kind to collect baseline-, treatment- and outcome data of CML patients in European countries and it also enables the development of a prognosis model to optimise individual treatment choices. As leukaemias are comparatively rare diseases, constructing a comprehensive registry requires close cooperation, both nationally and internationally. In order to obtain a pan-European picture of the incidence, treatment and outcomes of CML patients, the registry collects data of patients from different representative European regions. At present, the registry comprises the quality-controlled data of 4,500 CML patients aimed at providing clear documentation of treatment and outcomes in CML. “The continuation of the programme will provide us with access to the largest CML data collection that has ever been created,” said Professor Dr. Rüdiger Hehlmann, coordinator of the European LeukemiaNet and major driver of leukaemia research. From epidemiological, scientific and clinical perspectives, such a central registry is highly interesting in terms of leukaemia research.Another project dealt with by the partners in accordance with the guidelines of the European Commission relating to multinational European projects, focuses on information and education and is known as “spread of excellence”. Over the last three years, the project has enabled doctors and scientists to undergo continuous education in the field of chronic myeloid leukaemia, either by participating in annual symposia, lectures held across Europe, action days for young haematologists and training or by having access to informational material through the Internet. The primary goal of this programme is to facilitate the access to information for doctors and scientists as well as provide information to the broader public.EUTOS is a successful project being carried out by academia (the European LeukemiaNet organised by the Mannheim Medical Faculty) and industry (Novartis, one of the leading pharmaceutical companies in Europe), which was launched in 2007 in response to the vast differences across Europe in the monitoring and treatment of CML to enhance pan-European research into leukaemia.