The CML Advocates Network's Clinical Trials Registry currently lists 27 CML studies

Set up and driven by CML Advocates Network, the Clinical Trials Registry provides patients with easy access to information on ongoing CML studies. Entries are updated at regular intervals: new studies and sites are added whereas completed or terminated studies are no longer shown on the registry. Currently 27 CML studies from many countries around the world are listed. The most recent additions to the registry are:

  • OPTIC, a study to determine the efficacy and safety of ponatinib in patients with resistant CML in chronic phase. This study is including patients in 19 countries on five continents.
  • ENESTPath Patient’s Voice Italian Substudy. This study is exploring the emotional experience of patients participating in the ENESTPath study with nilotinib. The substudy is available only in Italy.

Eleven studies are ongoing but no longer recruiting new patients. These studies have been moved to the category "Trials that are no longer recruiting".Two trials have been completed or terminated: Spirit 3 and NordDutchCML006. They are no longer ongoing and therefore not any more listed on the database.

We would like to thank everyone for sharing information with us on new studies or changes in ongoing studies. Your invaluable input helps us keep the registry up to date. Thank you.

Do you know of any study that is not yet listed in our Clinical Trial Database? 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!

Patient-friendly summary of ELN Treatment Recommendations for CML now available in Czech and Romanian

ELN2013summary-coverIncluding the two new translations, the  summary of the treatment recommendations for people living with CML is now accessible in 22 languages: English, Arabic, Albanian, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Croatian, Czech, Danish, Dutch, French, Georgian, German, Hebrew, Italian, Polish, Portuguese, Romanian, Russian, Serbian, Spanish and Turkish. Please visit the summary at http://www.cmladvocates.net/cmlsummary

We would like to thank Leny Caban  from the Romanian organization „Asociatia Pacientilor cu Neoplazii Mieloproliferative - MIELOPRO” and Jana Pelouchova from the Czech organization „Diagnóza leukemie” for making our patient-friendly summary available to even more readers. Thank you very much, Leny and Jana, for dedicating your time and efforts to co-ordinating and performing the translation and review of the documents.

If your organization would like to arrange translation of the summary into your local language, please contact Jan, Giora, Nicole or Marion for advice at info@cmladvocates.net.

Getting ready for World CML Day 2016 on Sept 22

WCMLD 2013 0922Logo Today Together... is the motto for the World CML Day campaign!

One day, one community, one life changing reality…

Today, together we can make World CML Day more visible and engaging! Together we can make it global!

In order to help you spread the message of awareness and strengthen your voice, the CML Advocates Network has developed a World CML Day toolkit to make this day global and unique. The toolkit includes:

All material can be found here: http://www.cmladvocates.net/world-cml-day-9-22

If you are not sure how to use all these tools you can watch the training - video at http://www.cmladvocates.net/cmlhorizons/cmlhorizons2016 (Advocacy session #4).
This video contains valuable strategic information and suggestions for how to get the most out of the campaign, how to do your own campaign and learn from best practices.

If you have any questions please do not hesitate to contact Jelena at jelena@cugura.rs

We wish you all an inspiring and successful World CML Day 2016!

PS: Please do not forget to be creative and share the photos and activities of your World CML day with us by e-mailing to nicole@cmladvocates.net!

wcmld15 key-audiences

 

Report of CML Horizons 2016 in Slovenia is now available, plus all presentations and web streams!

CML Horizons 2016 plenaryFrom 6-8 May 2016, the CML Advocates Network welcomed 118 CML patient advocacy leaders from 65 countries at its global annual international conference "CML Horizons" in Ljubljana (Slovenia). Key CML experts reported about newest data on CML research, treatment and care. Leading patient advocates shared patient advocacy initiatives and best practice in areas like patient-generated evidence, fundraising, campaigning, access, generics, financial management, involvement in research and partnering with medical writers.

We have now compiled a detailed report which summarizes all presentations and discussions at CML Horizons 2016. Download the CML Horizons 2016 conference report here.

In addition, all presentations and video recordings of all sessions at CML Horizons are also available here.

EHA Education session: The role of the immune system in maintaining remission after stopping CML treatment

In the CML Education Session at the EHA congress, Dr Mustjoki from the University of Finland was presenting about immunological predictors of successful treatment discontinuation in CML.immunostudies

Lessons learned from treatment discontinuation studies are that nearly half of patients who have achieved deep molecular response at least for two years are able to discontinue TKI therapy. After discontinuation, residual CML on a very low, fluctuating PCR level has been detected in many patients. Similar issues have been observed with Interferon treatment in the 1990s where most patients had molecular evidence of residual disease despite successful discontinuation. Patients who had achieved good response on Interferon and have been able to stop therapy had increased levels of “natural killer immune cells” (NK-cells), lower levels of specific T-cells or a unique cytokine profile compared to those patients who failed stopping treatment. The immune mechanisms were also observed e.g. in the single-center study in Mannheim from 2001 where patients received imatinib and Peg-Interferon combination therapy and then subsequently stopped imatinib or both drugs.

Read more ...

EHA Education Session: CML in Blast Crisis – still a poorly understood, difficult to treat condition

edusessionBrian Huntly from the Cambridge Institute for medical Research, UK, was presenting about research in CML blast crisis in the CML Education Session at the EHA congress. CML in blast crisis still has a grim outlook. Life expectancy is still poor with 7-11 months, and transplant is required for long-term survival.  About 10% of CML patients are still diagnosed in advanced or blast phase, and around 5-10% progress within first 10 years of Imatinib therapy due to persistence and resistance of CML stem cells, so in total around 20% of CML patients are somehow affected by blast crisis.

The biology of CML progression is still poorly understood. BCR-ABL itself seems to be genotoxic and is providing the environment for mutations. Mutational studies are still rare, many conducted with old-fashioned sequencing technologies on a small number of patients, rarely studies with genome sequencing. Collaborating mutations as highly heterogeneous. Potential drugs that ar currently in use are Sorafenib (RAF inhibitor in use in renal and hepatic cancer), PD0325901 (MEK inhibitor in use in lung cancer), GSK343-EZH2, I-BET (Myc inhibitor in use in AML, Myeloma) and Ruxolitinib (JAK1/2 inhibitor). Therefore, potential molecular targets for blast crisis are MYC, EZH2/PRC2, RAS-RAF-MEK-ERK, JAK-STAT which are being investigated.

bcgenes2

In summary, CML progression is a rare but still catastrophic disorder which is poorly understood and very difficult to treat. Mouse models are in use to better understand the human disease and the mutational spectrum, and can inform both on biological mechanisms and development of therapies. Some drugs on the aforementioned targets are in early phase clinical testing. However, outlook is still poor so it is of key importance to prevent progression of CML into advanced phases.

-- Jan Geissler, 10 June 2016

Stopping treatment: Presentation about the state of play in stopping in the CML satellite symposium at EHA

satellitesession

Francois-Xavier Mahon was presenting about the current state of play in stopping CML treatment at the EHA Satellite Symposium on CML, hosted by Novartis. Here is a brief summary of Jan attending the session just now.

In terms of what we know about stopping Imatinib, Francois-Xavier Mahon presented the data of the first STIM (STop IMatinib) in France, where about 38% were able to successfully stop treatment without having detectable disease with a median follow-up of 65 months. Similar rates were observed in other STIM studies like STIM2 (50% still undetectable at 24 months), TWISTER (47% still undetectable at 24 months), A-STIM (61% without loss of MMR at 36 months), KID (59% without loss of MMR at 24 months), STOP2G-TKI (57% without loss of MMR at 24 months) and DADI (Dasatinib, 48% without PCR rise above 0,0069%), ENESTop (58% without loss of MMR) and EUROSKI (51% without molecular relapse at 24 months). So depending on therapy re-initiation criteria, across studies there seems to be roughly a 50:50 chance that stopping treatment in deep molecular response is successful.

Read more ...

Welcome, MOHA (Hungary) - now 109 patient organisations from 82 countries in the CML Advocates Network

We hereby proudly welcome a new member organisation in the CML Advocates Network: MOHA based in Budapest / Hungary is our second Hungarian patient organization. The CML Advocates Network now counts a total of 109 member organisations in 82 countries worldwide! See the list of CML groups in the Network on our world map.

Welcome, "MIELOPRO" (Romania) and CML-Armenia (Armenia) - now 108 patient organisations from 82 countries in the CML Advocates Network

We hereby proudly welcome two new member organisations in the CML Advocates Network: 1. "MIELOPRO" - Asociatia Pacientilor cu Neoplazii Mieloproliferative based in Romania and 2. CML-Armenia based in Armenia. The CML Advocates Network now counts a total of 108 member organisations in 82 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 Croatian language - and 19 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 20 languages: English, Arabic, Albanian, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Croatian, Danish, Dutch, French, Georgian, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Croatian, a big thank you to Dražen Vincek (president of CML Club in Croatian Leukaemia and Lymphoma Society (HULL)) and his colleagues for translating, reviewing and approving this new version of the lay-friendly summary!

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

 

Welcome, "CML Saudi Group"! Now 106 patient organisations from 81 countries in the CML Advocates Network

We hereby proudly welcome a member organisation in the CML Advocates Network: The "CML Saudi Group", which is a part of the "Saudi Cancer Foundation" based in Saudi Arabia. The CML Advocates Network now counts a total of 106 member organisations in 81 countries worldwide! See the list of CML groups in the Network on our world map.

Welcome, "Taiwan Bone Marrow Transplantation Association" and "CML Busters Family Support Group of California"! Now 105 patient organisations from 80 countries in the CML Advocates Network

We hereby proudly welcome two new members to our network: The "Taiwan Bone Marrow Transplantation Association" based in Taiwan and "CML Busters Family Support Group of California" based in the USA. The CML Advocates Network now counts a total of 105 member organisations in 80 countries worldwide! See the list of CML groups in the Network on our world map.

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