EUTOS Registry

The CML-Registry collects baseline- treatment- and outcome data across Europe

About the subproject Registry

Chronic myeloid leukemia (CML) is a malignant disease of the human myeloproliferative system. CML is typically associated with the so-called Philadelphia Chromosome which is the result of a reciprocal translocation of chromosomes 9 and 22 and characterized molecularly by the juxtaposition of the ABL gene from chromosome 9 and the BCR gene from chromosome 22 leading to the BCR-ABL fusion gene. Little is known about the epidemiology of CML. CML constitutes about 15% of all leukemia and occurs with an incidence of about 1-1.5/100,000. There is a male predominance, the median age at diagnosis is around 60 years increasing with age (Menzin J et al. Drugs Aging 2004;21;737-746).
There are currently three major treatment options: treatment with oral administered tyrosine kinase inhibitors (imatinib, nilotinib or dasatinib); allogeneic stem cell transplantation with the potential of cure, but depending on the availability of a donor and still linked with transplant related mortality of about 25%; and therapy with interferon alpha, AraC or hydroxyurea used more in the past, less used nowadays..

As CML is a comparatively rare disease, successful research, treatment development and evaluation demands for close collaboration, both nationally and internationally. Given the diverse treatment options and the growing median survival times, there was an urgent need to establish a strong infrastructure, which allows for a much faster population-based evaluation of the current state of treatment, prognostic models and subsequent evaluation of prognosis adjusted treatments. The major idea was to collect baseline-, treatment and outcome data of representative samples of CML patients in European countries by implementing and enlarging the current European CML Registry and its related subregistries. Thus a European CMLRegistry was established with the support received from the European Network of Excellence (NoE) (European LeukemiaNet (ELN) funded by the EU)

Created by: A. Hellenbrecht , generated 2007/12/19 , last changed: 2012/09/04