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
Including 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 .
Getting ready for World CML Day 2016 on Sept 22
... 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:
- Adaptable artwork for print and online use (posters & flyers)
- A photo database
- A press release
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
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 !
Report of CML Horizons 2016 in Slovenia is now available, plus all presentations and web streams!
From 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.
Our publication in LEUKEMIA: Patients' declaration on the use of generics in CML treatment
Market exclusivity for imatinib has lapsed in 10 EU countries, most countries to follow in 2016. CML patients have been increasingly exposed to generics and copy drugs in the treatment of CML, raising concerns about outcomes when patients are switched between products for non-medical reasons.
A survey of patient organisations and physicians by the CML Advocates Network in 2013 determined that generic imatinib and dasatinib were available in 32 countries. In 2014, CML patient organizations released a declaration, calling for quality and consistency when TKI generics are prescribed, demanding data on bioequivalence and clinical equivalence to the originator drug. Patients should not be switched between products with the same substance for non-medical reasons. If a switch is enforced, it should not happen more than once a year, with sufficient follow-up assessing safety and efficacy. In case of loss of response or increase in toxicity after switching, switching to the previous treatment or another treatment should be allowed. More frequent molecular monitoring post-switch should allow early detection of differences in effectiveness or toxicity. These recommendations by the patient community may support experts' discussion on CML management with TKI generics.
Our paper has now been published in the journal LEUKEMIA, doi: 10.1038/leu.2016.220
European Reference Networks, a unique opportunity to take collaboration and patient care in hematology to the next level, was a core topic at EHA 2016
The 21st European Hematology Association’s Congress (EHA, 9-12 June 2016) was abuzz with networking between over 10.000 participants who travelled from all over the world to Copenhagen. The EHA Congress combined sessions and a diverse range of topics around Hematology highlighting state-of-the-art clinical practice, recent advances, new data and views from different stakeholders and international organizations. A hot topic this year were the European Reference Networks (ERNs). The CML Advocates Network is actively engaged in the upcoming ERN on rare hematological diseases.
Retweeted Sunday, 15 July 2018
Retweeted Friday, 13 July 2018
Retweeted Friday, 13 July 2018