I wanted to update you on the situation of the International CML adherence survey.  There are currently more than 2000 responses from 74 countries. There are very few projects and research that include so many participants, and is being done by patients and for patients.

The minimum number of responses needed in a specific country to be able to perform a valid statistical analysis in this country is 30. So far there are 24 countries which will be included in the analysis, and I am sure there will be more.

Please have a look at the survey responses by countries, and see if your patient’s voice is already included in the final data. Now is the time to increase the number of CML patients who will participate in this important research. Please post reminders with the survey link on your website, send the link in direct emails to your members, post it on your forums, discuss it during your meetings, contact your Drs and Hematologists to encourage them to help recruiting patients, and any other idea you might have.

Here is the link to the survey: http://survey.euro.confirmit.com/wix5/p929997428.aspx

The survey closes on 2 January 2013. The analysis will start in January 2013, with 3 goals: to better understand the drivers of non-adherence of CML patients and regional and cultural influences, to identify effective tools that will help different segments of the CML patients to improve their compliance to take their medication, and to write a scientific paper about this unique research done by patients e.g. for publication either at the EHA congress or in a scientific journal.

Kris