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EMS Research: Patient Study "CML"

Hi all, My doctor forwarded me the details of this research project who are looking for participants (including those with CML) to complete a questionnaire - I thought it might be of some interest to those of you that want to share your experiences about your diagnosis and treatment. I actually found the questions quite interesting - it definitely made me think! It did take me slightly more than 20mins though! If you want to simply email Jana- she is the lady I was put in touch with: (link deleted by moderator) Thanks all Lloyd x

Hi Lloyd,

I had actually deleted the post put on this form by the company you have given the link for. Whilst I undertand that you are free to take part in questionnaires of any type, this forum should not be used to recruit patients to private company sponsored questionnaires without getting permission from the moderators first.

I have therefore deleted the link you have given in your post.

This company have also been targetting other CML forums in order to recruit patients for their questionnaire. The ACOR.org list has already cautioned against this company doing this. It is no better than the spammers we now have to delete from this forum on a daily basis who are selling anything and everything.

I am not sure what the data collected from this questionnaire will be used for but it is no doubt  a good way to build a database of patients and given that this company have appeared on several sites this week- globally- this is what the real motive might be- Such databases built on personal details, are very useful (and potentially very profitable) for private companies.

Best wishes,

Sandy