Leukemia Patient Advocates Foundation launches CML Adherence Study in 12 countries on 22/09/2012 – and needs your help!

hilfe3The Leukemia Patient Advocates Foundation, the legal host of the CML Advocates Network, is proud to announce the launch of phase 2 of its International CML Adherence Survey. The survey will launch in 12 countries on International CML Awareness Day (22 Sept 2012). As it is organized by the non-profit patient community, this research work urgently needs your support now: If you are a CML patient treated with TKI, please participate. If you are a doctor treating CML patients: Please encourage your patients to participate!

The drivers behind non-adherence, a highly prevalent problem in oral cancer treatments but also in many other diseases like diabetes, are not well understood to date. Earlier clinical studies in Chronic Myeloid Leukemia have revealed that both intentional and non-intentional non-adherence are very common, but so far, the reasons, as well as feasibility of adherence tools, have not been investigated in depth.

The goal of this important survey, which builds on a pilot survey that had already revealed invaluable insights, is to better understand patients' attitudes with taking their oral medication for the treatment of CML. It aims to gain greater understanding of patient attitudes and behaviors surrounding adherence, and ultimately help support physicians and patients to improve compliance and to develop adherence tools.

This second phase of the research work was developed by a working group of eight CML patient advocates and 2 CML experts from European countries. The survey will be conducted online and offline:

  1. An online survey conducted in 12 languages: English, Spanish, German, French, Italian, Portuguese, Finnish, Dutch, Czech, Hebrew, Polish and Russian.
  2. A hard copy questionnaire in 3 countries: Germany, France and Italy. The reason for conducting an offline survey is to minimize the bias of just recruiting respondents over the Internet.

The CML research groups in three countries, GIMEMA in Italy, FI LMC in France, as well as the German CML Study Group, are cooperating with the CML Advocates Network to distribute hard-copy questionnaires to CML patients.

Anonymity and confidentiality of all responses will be assured, so results cannot be attributed to any individual patient. Participants in the survey need to be CML patients that are currently under TKI treatment and be at least 18 years old.

The CML Advocates Network now calls upon all CML organizations and physicians in the worldwide Network to take part and help recruit patients to answer the online survey. The Network needs to reach at least 2.000 responses from all over the world in order to be able to identify differences between countries in adherence levels and attitudes. The Network will not be able to reach this goal without your help and support.

PLEASE PARTICIPATE! The survey can be found here: http://survey.euro.confirmit.com/wix/p929997428.aspx

The survey is organized, run and analyzed by the patient community. To cover the costs running a multinational survey in 12 countries, the Foundation has received unrestricted educational support from ARIAD, Bristol-Myers Squibb, Novartis and Pfizer. None of the companies had any influence on the content or conduct of the survey.


CML Advocates Network
Giora Sharf:  info@cmladvocates.net


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