IMI Project "HARMONY - Big Data for Better Health Outcomes" launched, CML Advocates Network involved in coordinating patient community input
The Innovative Medicines Initiative (IMI) has approved HARMONY, a 5-year project that aims to foster better access and care for patients with various hematologic malignancies (HM) with the use of big data. The project is made up of 51 partners from 11 European countries, including 7 pharmaceutical companies.
We are very excited that CML Advocates Network will be contributing to this unique project. Jan Geissler is the Work Package leader that will be coordinating HARMONY's Stakeholder Forum and patient input of the haematology patient community into this project. The project will kick-off on 16 January 2017 in Salamanca, Spain.
CML Horizons 2017 - Save the date: 26-28 May 2017
Join us for the 15th “CML Horizons: Learn. Share. Grow" Conference
DATE: 26TH TO 28TH MAY 2017
LOCATION: FRANKFURT, GERMANY
Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians.
This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization.
Registration process will start the 2nd week of January 2017 and will inform you as soon as the registration platform is online.
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ASH 2016 update on stopping CML treatment with TKIs in deep molecular response
Tyrosine kinase inhibitors (TKI) have dramatically improved survival of CML and made it a chronic disease. However, life-long therapy is still advised according to expert recommendations and the product labels of current TKI treatments. Depending on the choice of TKI, about 40-70% of CML patients reach a deep molecular response, meaning a BCR-ABL ratio of 0.01% (MR4) or below. Given it had been observed that some patients were able to stop treatment in deep remission without a recurrence of the disease, the effectiveness of stopping TKI treatment of CML patients at large having a sustained, deep molecular response is a key question that is being investigated in various studies, and is probably the most debated CML topic at this year’s ASH.
We are summarizing the most important presentations, discussions and posters on that important topic at the ASH congress this year.
Webinar: GENERIC TKIs IN CML
The Glivec patent expires in most countries latest on 21 Dec 2016.
The CML Advocates Network has been following the situation of TKI generics closely for 3 years, and has now provided a webinar which summarizes the current status.
This webinar answers some important questions, such as:
- What are generics, and do they differentiate from innovator products?
- Which generics of CML Tyrosine Kinase Inhibitors exist?
- What do we know about efficacy and safety?
- What information on CML generics is available to patients?
- What has the patient advocacy community done so far?
- What can patients and patient advocacy groups do about CML generics?
More can be found on our CML Advocates Network Knowledge Base on CML Generics at http://www.cmladvocates.net/generics.
If you want access to the slides, please contact Jan Geissler at jan@cmladvocates.net.
Webstream via AuthorStream (allows to skip slides)
Welcome, CML Palestine (Palestine) - now 110 patient organisations from 83 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: CML Palestine based in Palestine. The CML Advocates Network now totals at 110 member organisations in 83 countries worldwide! See the list of CML groups in the Network on our world map.
Today is World CML Day - 9/22
TODAY IS WORLD CML DAY!
One day, one community, one life changing reality… Today we unite to take World CML Day global!
Today we are together to take a stand, share our needs and raise awareness!
Today and all week long in September organizations around the globe are celebrating World CML Day through their activities, by sharing their achievements over the past year and by pointing out the problems they are still facing.
CML ADHERENCE APP “CML Today” is celebrating its 1st birthday! “CML Today” is an app that has been developed to support adherence to TKIs as well as to track patients` PCR results. The mobile app is now available in 7 languages: English, German, French, Spanish, Portuguese, Hebrew and Arabic with more languages to follow. You can download „CML Today“ free-of-charge from the Apple App Store (iphone) and in the Google PlayStore (Android). Please talk about “CML Today” and encourage CML patients to use “CML Today”!
Please also check out the activities that are taking place all over the world on World CML Day 2016 and the campaign materials developed by members of the CML Advocates Network - and do not forget to share your activities with us and other groups! Last but not least, don´t miss our Facebook-page!
More information on World CML Day 2016 can be found here.
Tomorrow is World CML Day 2016!
... is the motto for this year´s World CML Day campaign, which will take place tomorrow, Thursday Sept 22!
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 and a press release.
Check out our members´ campaign materials and also don´t miss our Facebook-page.
Please share photos and activities of your World CML day with us by e-mailing to nicole@cmladvocates.net, so we can add them to our list of worldwide activities and to our photo gallery.
We wish you all an inspiring and successful World CML Day 2016!
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 info@cmladvocates.net.
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 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!
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
