Received today from Giora at the CML Advocates Network, a fantastic study and well worth reading:

It is my great pleasure to update you on the great success and the recognition that our adherence survey has received at the EHA conference last weekend in Stockholm.

Here are some key facts related to our study:

  • We launched the survey on World CML Day, 22.9 2012. We had 2 arms – the on-line survey where patients were recruited by CML patients groups and CML forums on the Internet, and the same questionnaire as hard copy, which was distributed by physicians in 3 countries: France, Germany and Italy. The survey was prepared in 12 languages. The on-line recruitment closed on 3 January 2013, and the deadline for paper questionnaires was 31 January. In just a short time, we have received 2151 responses on-line from patients in 79 countries, and 395 responses on the hard copy questionnaires. We couldn’t have done it without your help and support.
  • For those of you who are interested to see the web-stream of my presentation and see the slides which contain some of the main findings and the messages we wanted the haematologists to understand, you can go to the following link and see the slides and hear my talk and see some pictures:
  • You can also download the PPT file of the presentation there, so feel free to use it and to translate it. You can also hear my talk about the results of the survey, which I gave at CML Horizons 2013, which brought together more than 100 CML advocates from 60 countries, and was held in Prague last month.
  • Most of the patients groups in many countries did an outstanding and remarkable work on recruiting patients to answer the on-line link. Some of them have translated the survey to their languages, printed it and had patients complete them, and then inserted the data to the on-line link. Some of these groups who did a remarkable work are: The MAX foundation, the patients groups in Thailand, Lebanon, Serbia, Slovenia, Venezuela, Philippines, Mexico and many more. Thank each of you for your help and support!
  • We have also received a great support from the following CML forums on the internet and many of the patients who visit these forums have completed the survey: The Asian CML support group lead by Anjana and Roy, The UK CML support group led by Sandy Craine, the NewCMLDrug website and forum Led by Jerry Mayfield, and the CML2 forum. We also received support from Novartis, Pfizer, BMS and Ariad to contract a logistics agency that helped to collected and analyse the questionnaires.
  • Special thanks to those who worked very hard to carry out the hard copy survey in 3 countries:
    • Mina Daban the head of the LMC patients group in France and the FI LMC- the CML haematologists group in France.
    • Felice Bombaci the head of the Italian CML patients group and the GIMEMA group – the Italian CML Doctors.
    • Jan Geissler of Leukemia Online, the German CML patients support group, and to the German CML Study group.
  • Special thanks to the advisers who have accompanied us during this special journey: Joelle Guilhot from France, Lina Elliason from the UK, Fabio Efficace from Italy and Verena Hoffmann from Germany. These experts advisers are all involved heavily in CML research and publications, and their experience has contributed a lot to our success.
  • This is no question the largest study done with CML patients on any topic, and the largest study ever done on adherence to medications like TKIs. The data base is huge and we have so far done only initial descriptive analysis, a submission to EHA, and a publication on CML Advocates Network. In-depth multivariate analysis has just started now, with collaboration of the GIMEMA work group in Italy led by Fabio Efficace.

I am very glad that with your help we have increased the recognition of the CML community as one of the most active worldwide patients communities. Thank you all so much. We will keep you updated on further developments as we are now aiming to prepare a publication at one of the scientific magazines and also submit an abstract for ASH.