CMLS group partnered with MAX Foundation on their global 'What is MY PCR? campaign. We would like to share the "What is MY PCR" campaign impact survey which has just been officially launched!
The survey is available in English, Spanish and Thai, however, translations will continue to be added to the website as they are received.
To take the survey, visit: http://www.surveymonkey.com/s/WhatIsMyPCRImpact.
....interestingly, on the first page, it's mandatory to say what the "MyPCR" campaign has encouraged you to do, with a list of options.
Since I'd never heard of the campaign, and there's no option to say so, it refuses to allow you to continue with the survey unless you tell it how a campaign I'd never heard of helped me in a way it hasn't.
The survey is, for me anyway, fatally flawed as I can't get past the first page :(
Rod
Hi Rod,
yes you have a very good point. I took the survey and did make a comment, but that was because I had heard of the campaign- I have posted on here about it during this last year as the CMLSgroup are one of the partners in this global campaign run by the MAX Foundation- and we have shared their basic PCR FAQ booklet with quite a few of our UK members.
Nevertheless, you should be able to take the survey without comment. I think the basis of this survey is that the MAX Foundation (who run (GIPAP) the global patient assistance scheme for patients - outside the US and UK/Europe- who cannot possibly afford to pay for imatinib)need to assess who their campaign is reaching and who has benefitted from it.
In UK/Europe and US, there are issues with whether patients have access to good quality PCR monitoring. In the US getting accurate Q-PCR results is a real problem (as Chris might be able to explain from his own experience) because they have system based on private health insurance and the 'payers' dictate which lab your clinician can use to send your blood samples to. This means that 'price' pays a significant role rather than quality of the methodology.
In other regions of the world outside of Europe and North America, patients struggle to even get access to PCR testing so have to rely on cytogenetics to assess response to TKI therapy. This is why the MAX Foundation campaign was started.
If you want to complete the survey then I suggest you just put a comment that you had not heard of their campaign and/or that you do have good access to Q-PCR monitoring. That should take through to the completion of the survey.
Best... Sandy
