CML Advocates Network, April 2020

For Chronic Myeloid Leukemia Patient Group Advocates

CML Advocates Network, April 2020
 


Recently published: New ELN recommendations for treating CML

 
We are happy to announce that the European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia have been published on March 3rd, 2020 in the journal #Leukemia.
 
Updates on the therapeutic landscape, treatment-free remission management, generic medicines and monitoring challenges, are among the topics addressed.
Read the open access article here


Two CML posters accepted for the European Conference on Rare Diseases & Orphan Products, May 2020

 
The 10th European Conference on Rare Diseases & Orphan Products has accepted two posters from the CML Advocates Network.
 
Our projects TFR for CML patients research and our CML Community Advisory Board have been selected to be presented under the Themes: "When therapies meet the needs: enabling a patient-centric approach to therapeutic development" and "Rare Disease Patient Groups Innovations".
The ECRD 2020 has changed to an online event because of the new #COVID19 situation but we will keep our presence by attending and presenting the CML patient perspective on 14-15 May 2020.
 

Impact study of the GIPAP access program

 
The Glivec International Patient Assistance Program #GIPAP is a unique direct-to-patient program that provides imatinib (Glivec) at no cost to eligible patients in low- and middle-income countries with CML or GIST.

Read this interesting article analysing the impact of the program between 2001 and 2014 using data collected by our member organisation, The Max Foundation.
 
 
Read the Open Access article here

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Guidance on the Management of Clinical Trials during the COVID-19 pandemic

Please, read this guidance, agreed by the Clinical Trials Expert Group (CTEG) of the European Commission supported by the EMA, the Clinical Trials Facilitation and Coordination Group (CTFG) of the Heads of Medicines Agencies (HMA) and the GCP Inspectors’ Working Group coordinated by the EMA. 
 
Very interesting topics for patient advocates as additional clarification on obtaining informed consent, the link to methodological guidance on statistical considerations in relation to COVID-19 pandemic, advice on IMP stocks, safety reporting, the conduct of audits and temporary halts as well are included in this document.
 
This is Version 2 (27th March 2020) but due to the rapidly evolving situation, further updates to this guidance are possible and likely.
 
Read the Guidance on the Management of Clinical Trials during the COVID-19 pandemic
 
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