Welcome to our 100th member in the CML Advocates Network!

Since its initiation in 2007, the CML Advocates Network has grown at an amazing pace. Since January 2015, 10 new organizations from 7 countries have joined the network! Our newest members are the "Indonesian CML & GIST Community (ELGEKA Indonesia)" and “Leucémie Espoir” from Mali. WELCOME! With this, we have now reached a total of 100 members based  in 76 countries worldwide! See the list of CML groups in the Network on our world map.

The CML Advocates Network's Clinical Trial Registry now lists 24 CML studies

The CML Clinical Trials Registry is growing steadily. Our database continues to benefit from additional studies which makes this resource increasingly valuable to patients. Seven new studies have been entered since November 2014. The registry now lists a total of 24 CML studies at http://www.cmladvocates.net/cmltrials and we are continually adding further studies as they become known to us. Thanks very much to everyone who provided information on new studies or helped ensure that the registry entries are correct and remain up to date. 

The recently included studies are:

For other studies that were previously included in the registry, we have updated the list of participating study centers and added study information or relevant links.

Recruitment has been completed in five studies, meaning that no further patients will be included. These studies have been moved to the new category “Trials that are no longer recruiting”.

The registry has also been improved by a new geographical feature. You can now find the region where the study is being performed in square brackets immediately behind the study title (for example, “Drug xy for CML in chronic phase [Europe, North America]).” 

Do you know of any study that is not yet listed here? Please let us know by filling out this form.

Or is there an entry which should be corrected? If so, please send us an email.

Please also visit our discussion forum if you have any questions or wish to share your experience on these studies!

Now 98 patient organisations from 74 countries in the CML Advocates Network!

We are truly overwhelmed by the rapid growth of our network. Since January 2015, we have welcomed 8 new organizations from 5 countries! It´s so great to see the community growing at this pace! Today we want to welcome The National Cancer Control Foundation based in Yemen as our 98th member organisation. We now have members in 74 countries worldwide! See the list of CML groups in the Network on our world map.

Patient-friendly summary of the ELN CML Treatment Recommendations now also in Serbian - and 15 other languages

ELN2013summary-coverThe CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.

It is now available in 16 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Serbian, thanks to Jelena from the CML Association of Serbia).

See our ELN Summary here: http://www.cmladvocates.net/cmlsummary

 

4 new members: now 96 patient organisations from of 72 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleThe CML Advocates Network is growing fast. We hereby proudly welcome four new members to our network. These are: APSBES / DILIGENCE GROUP from Togo, LUZ DE ESPERANZA from Peru, BCSG from Bangladesh and Zero Club from South Korea. With this we have now reached the number of 96 organisations from 72 countries across all continents. How exciting! See the list of CML groups in the Network on our world map.

The CML Advocates Network welcomes another new member: now 92 patient organisations from of 70 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe are delighted to welcome another new member to our network: the group "ASSOCIATION DE LUTTE CONTRE LES LEUCEMIES AU NIGER" is our first member organization based in Niger. WELCOME, NIGER! From today, the Network connects 92 organisations from 70 countries across all continents. See the list of CML groups in the Network on our world map.

The CML Advocates Network welcomes two new members: now 91 patient organisations from of 69 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe are delighted to welcome two new members to our network: "Maxvida" from Chile and "Osmijeh Tuzla" from Bosnia and Herzegovina. "Maxvida" is the first Chilean member of the CML Advocates Network. With "Osmijeh Tuzla", there are now two member organizations based in Bosnia and Herzegovina. From today, the Network connects 91 organisations from 69 countries across all continents. See the list of CML groups in the Network on our world map.

ASH 2014 Interviews on newest CML data, adherence and advocacy

ASH-interviewsAt the ASH Meeting in San Francisco, PatientPower, Brandcast Media, The National CML Society USA and the American Journal of Managed Care conducted interviews with Dr. Michael Mauro, Giora Sharf, Greg Stephens and Jan Geissler.

See the the ASH 2014 interviews covering issues around newest CML trial data and quality of life issues, accessing CML treatment, patient advocacy, treatment adherence in CML, the book "Faces of Courage and Hope".

Read more ...

Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages

ELN2013summary-coverThe CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.

It is now available in 15 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).

See our ELN Summary here: http://www.cmladvocates.net/cmlsummary

 

ASH 2014 Report #2: New data on Ponatinib – most potent, but overdosed?

EPIC-Bestresponse[Translations: German]

Ponatinib, the first 3rd generation Tyrosine Kinase Inhibitor and potentially one of the most potent CML drugs on the market, has gone through a roller coaster ride over the past two years.

The patient community has been following the development of ponatinib since it the first data of a phase I study with the so-called AP24534, today called ponatinib/Iclusig, was presented at ASH 2009. Given it is the only drug effective against T315I and some other multi-resistant mutations, and seems to work very effectively in many patients even after failure of imatinib, dasatinib and nilotinib, the drug has deserved a lot of attention. Based on a rough regulatory ride due to new concerns on the side effect profile, the CML community was now curious to hear the new data on ponatinib presented at ASH 2014. Of special interest were updates on side effects and risk factors, and whether those trial participants who had to reduce their ponatinib doses were still responding well to the drug, but with better tolerability.

Read more ...

A review of 2014 in the CML Advocates Network...


CML Advocates Network-logo-rectangleA busy year is coming to its end, and it´s a good time to reflect on our achievements and activities of the past twelve months. To name just a few:
  • An exciting and enriching "CML Horizons" Conference in Belgrade in May 2014.
  • World CML Day on 22 September 2014 that demonstrated the unity of the global community with more than 30 worldwide activities.
  • Publication of the International CML Book "Faces of Courage and Hope", published just in time for World CML Day 2014.
  • Our inofficial Clinical Trial Registry that has significantly expanded over the past year. Currently the database lists 19 ongoing CML trials.
  • Our CML Generics Declaration that a group of CML patient advocates agreed on in May 2014, complemented by a "knowledge base" on CML generics.
  • Launch of a number of new educational videos for patients, aimed to highlight the subjects of "adherence", "side effects" and "testing and monitoring".
  • Publication of a patient-friendly summary of the European LeukemiaNet recommendations (2013) for the management of Chronic Myeloid Leukemia.
  • Publication of a summary of the patient advocacy sessions at the EHA congres in June 2014.
  • Publication of two first reports of the ASH meeting in December 2014.

 

Read more ...

ASH-Report #1: Stopping CML treatment for therapy-free remission

EUROSKI[Translations: German - Russian]

Treatment-free remission, or stopping treatment in stable long-term deep molecular remission, has probably been the most reported topic at this year’s ASH.

The European Stop Tyrosine Kinase Inhibitor study (EURO-SKI), being the largest ongoing STOP study, has just completed recruitment of 700 participants. An interim analysis of the first 200 patients from 8 European countries with a follow-up of minimum 12 months was now presented. The study aims to define prognostic markers to increase the rate of patients in durable deep molecular response after stopping TKI treatment, evaluation of molecular monitoring procedures, and the assessment of quality of life.

Read more ...

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