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The therapeutic landscape of CML has profoundly changed over the past 7 years so the European Leukemia Net convened an expert panel to critically evaluate the current evidence and update its previous recommendations.
The new “European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia” were published in March 2020 in the prestigious journal Leukemia.
In order to improve the information available to patients and support them to access these guidelines, we have developed once more a patient-friendly summary of recommendations for CML management based on the ELN Recommendations 2020.
It is made available at this stage in 20 languages and more are coming. We are welcome to initiate community translations by member organisations of CML Advocates Network under the provision that members have them co-validated by a local CML specialist with whom the member organisation regularly works. If you would like to help us making the summary available in your language, please, contact us at firstname.lastname@example.org.
This is a result of a genuinely patient-led project and aims to help patients to better understand CML management and communicate with their doctors on treatment and diagnostics.
Download the Patient-friendly Summary of the ELN 2020 CML Treatment Recommendations
ELN Recommendations Story
In the past ten years, the CML Advocates Network has developed two patient-friendly summaries of the European Leukemia Net (ELN) recommendation for treating CML patients. Both documents were widely adopted by the CML patient community at the national level.
In 2008, the European LeukemiaNet (ELN) published “Chronic Myeloid Leukemia: An Update of Concepts and Management Recommendations of European LeukemiaNet” in the Journal of Clinical Oncology.
While treatment guidelines and recommendations are recognized as being the standard of care by haematologists, they can be difficult for CML patients to understand at some points. Therefore, in 2009, an international working group of the CML Advocates Network composed of CML patient organisations and experts developed the first patient-friendly summary of recommendations for CML management.
Four years later, advances in CML treatment, particularly regarding tyrosine kinase inhibitors (TKIs), mandate regular updating of concepts and management. As a result of that, Leukemia Net published in 2013 an update of the recommendations for management CML in the journal Blood.
Once again, the CML Advocates Network ran an initiative to create a patient-friendly version supporting CML patients worldwide. This 2013 summary for patients was initially translated into six languages but finally, we get translations in 22 languages, all of them validated by a local haematologist. Since publication on the CML AN website the patient-friendly summaries have been viewed by 290,000 visitors and the pdf documents downloaded on over 30,000 occasions.
The 2020 summary is based on the article “European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia”, published in the medical journal Leukemia Hochhaus, A., Baccarani, M., Silver, R.T. et al. European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia. Leukemia 34, 966–984 (2020). https://doi.org/10.1038/s41375-020-0776-2
Full and final editorial content is wholly and entirely the responsibility of the CML Advocates Network, hosted by the Leukemia Patient Advocates Foundation. Project management, translation costs, and printing were funded through an unrestricted educational grant from Pfizer Inc. to the CML Advocates Network. CML Advocates Network is additionally a recipient of unrestricted funding from Pfizer (and other corporate life-sciences companies) for its CML Horizons Congress, Community Advisory Board and Patient Registry.
We would like to express our gratitude to all collaborators involved in the development of this patient-friendly summary 2020. Authorship and ownership of this document rest solely with the CML Advocates Network.