A patient-friendly summary of the European LeukemiaNet recommendations (2013)
for the management of Chronic Myeloid Leukemia.

The European LeukemiaNet (ELN), a research network of excellence funded by the European Union, provided treatment recommendations in 2006, 2009 and again in 2013. These recommendations are based on a consensus of 32 CML experts from Europe, America and Asia-Pacific, based on the best scientific data available at the time of publication. They were developed for doctors to help CML patients like you to get the best standard of care and should be recognized as the standard of care by CML treating physicians.

The 2013 update of the ELN Recommendations reflects that new drugs to treat CML had become available. Important endpoints for monitoring the effectiveness of therapy have been defined and the role of diagnostic tests to optimize follow-up have also been included.

The CML management recommendations may be difficult for patients to understand. A workgroup of CML patients of the CML Advocates Network, advised by medical experts, has developed this document in lay language to provide CML patients with a simplified summary of the information contained in the ELN Recommendations. This document focuses only on the 2013 publication content and remains valid until the ELN provides a new and/or updated version of the CML Treatment Recom­mendations.

We hope this summary will be a helpful tool for patients to discuss CML disease management and treatment choices with their doctor.

Patient-friendly summary of the ELN Treatment Recommendations

Our summary is available here in multiple languages. Some are available as an online webpage (for online reading, including glossary), some as a PDF only (for printing).

More languages are being prepared. If you would like to help us making the summary available in additional languages, please contact Jan, Giora, Nicole and Marion at info@cmladvocates.net.

About the project

The summary was produced by the following workgroup of patient advocates:

• Jan Geissler (Workgroup Chair), CML Advocates Network / LeukaNET, Germany
• Felice Bombaci, Gruppo AIL Pazienti LMC, Italy
• Mina Daban, LMC FRANCE, France
• Euzebiusz Dziwinski, Nationwide Association for CML Patients Aid, Poland
• Tony Gavin, Leukaemia CARE, United Kingdom
• Jana Pelouchová, Diagnóza CML, Czech Republic
• Giora Sharf, CML Advocates Network / Israeli CML Patient’s Organisation, Israel
• Jan de Jong, Stichting Hematon, The Netherlands

The summary was reviewed by the following experts:

• Prof. Gianantonio Rosti, St Orsola University Hospital, Bologna, Italy
• Prof. Francois-Xavier Mahon, University of Bordeaux, France
• Prof. Guiseppe Saglio, University of Turin, Italy
• Prof. Gert J. Ossenkoppele,VU University Medical Center Amsterdam, The Netherlands
• Prof. Pia Raanani, Rabin Medical Center, Petach Tikva, Israel

This document is a result of a genuinely patient-led project. Authorship and ownership of this document rest solely with the CML Advocates Network. It is made available in multiple languages at http://www.cmladvocates.net/cmlsummary.

Please feel free to redistribute this document as long as the original text is not being changed or amended.

Older versions of our summary

In 2011, our European Workgroup published the patient-friendly summary of the ELN Recommendations of 2009. The old files are available here.

Acknowledgements

This summary of the CML Advocates Network is based on the article European LeukemiaNet recommendations for the management of chronic myeloid leukemia: 2013. It was published in the medical journal Blood in 2013 (Baccarani, M et al: Blood, 2013; Vol. 122: 872-84). Your doctor, university library or patient group may be able to get you a copy of the original article.

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 Bristol-Myers Squibb to the CML Advocates Network.