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 four major treatment options: 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%; treatment with imatinib, an orally administered drug treatment achieving high cytogenetic response rates and more conventional therapy with interferonalpha, AraC or hydroxyurea in case of resistance or intolerance of imatinib, novel tyrosine kinase inhibitors, like dasatinib or nilotinib can be applied.

As CML is a comparatively rare disease successful research, treatment development and evaluation asks for close collaboration, both nationally and internationally. Given the diverse treatment options and the growing median survival times there is 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 is 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 has been planned and will be established with the support received from the
European Network of Excellence (NoE): European LeukemiaNet (ELN) funded by the EU. Its activities will be enhanced through this Scientific Collaboration agreement with Novartis.

Created by: A. Hellenbrecht , generated 2007/12/19 , last changed: 2008/07/31