Big Data and Chronic Myeloid Leukemia

 

How Big Data and large data sets are helping to ask and answer previously unknown questions and answers in research on hematological diseases.

by Jan Geißler, co-founder of the CML Advocates Network  

Logo Harmony MAIN Regular 

Big Data – the term has been a topic of controversial debate for several years.

Why, despite all the criticism, should we gather and analyze big amounts of data? Why does it hold great potential for health research?

How does the HARMONY project launched by the EU’s Innovative Medicines Initiative make use of Big Data, and to what extent do patient organizations have a central role to play in this?

And what role does it play in CML? 

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ASH 2020 CML Conference Report

The 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology was finally held virtually on December 5-8, 2020, given the coronavirus outbreak situation.


We have prepared a Conference Report in order to provide you the latest updates on the management of chronic myeloid leukemia and the most important highlights presented in this key meeting for the CML community.


Download the ASH 2020 Conference report by clicking on the image below:

ASH20 Report low

 

 

In Memoriam of Ahmed Awad

The entire chronic myeloid leukemia community mourns the loss of our dear friend Ahmed Awad from Egypt.Ahmed

Ahmed was a chronic myeloid leukemia patient himself for many years and founder of our member organisation in Egypt "Power of CML" in June 2014. He was a dedicated patient advocate in his country as well as a strong supporter of the global initiatives of the CML Advocates Network, as co-organizer of the World CML Day events in the Middle East and Africa region in the past years, among others.

In Ahmed owns words, "Once I got diagnosed with CML, I started getting depressed. However, I recognized how to overcome this feeling and how to help other patients to know more about the development of the latest remedy methods."

Our Steering Committee representative of the region, Bahija Gouimi, President of AMAL in Morocco, states: "I lost my best friend. He was a son for me. He was a passionate advocate, always fighting to improve the quality of drugs and patients' lives in Egypt."

We have lost a dear friend and valued dedicated colleague. Our grief and sadness at this time are little compared to what Ahmed’s family must be feeling. Our hearts and prayers go out to them.

Rest in peace, dear Ahmed.

 

ELN Recommendations 2020

ELN General

 

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 15 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 info@cmladvocates.net.

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

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CML Atlas East Europe

Atlas 2

CML Atlas East Europe is the final product of East Europe and West Asia regional project run by CML Advocates Network from 1st December 2019 to 31st March 2020.

The activity started with a regional survey reaching our Eastern European patient members addressing a sample of respondents of CML advocates and CML doctors based in 19 countries from the Central and Eastern EU region. 

An online questionnaire was created by using cloud-based online survey development software to collect data on general information about CML, availability of TKIs, availability of PCR, running clinical trials and treatment-free remission data.

Results of this collection have been published on a website http://ceeatlas.cmladvocates.net where we can navigate through the menu section and be informed about key topics and issues in the different countries.

Visit the CML Atlas East Europe Website 3

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ASH 2020 Virtual Conference

ASH2020

 

Originally to be held in San Diego, California, the 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology will be presented as an all-virtual event on December 5-8, 2020, given the continuing threat of the COVID-19 pandemic.

This year we will be attending this important meeting for the CML patient advocacy community for an invaluable educational experience and the opportunity to review many scientific abstracts highlighting updates on chronic myeloid leukemia.

We have prepared a selection of the most critical presentations on CML to be followed by the CML patient advocates. Please, note all times listed are in Pacific Time (PST):

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