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Old 05-03-2010, 06:55 PM #31
bandido1 bandido1 is offline
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Join Date: Aug 2008
Location: Sherman TX
Posts: 204
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bandido1 bandido1 is offline
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Join Date: Aug 2008
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Default Lookong for input
Debi:
It seems to me you have now received what amounts to an information overload, but nevertheless valuable patient input. Now, it will be interesting to see how you market your program. Perhaps "M" of MJFF would do the TV promo soliciting volunteers for the clinical study? We will all be interested in reading about your efforts. There are some creative participants on this forum who would, I believe, be willing to help.

Bob C

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Originally Posted by Debi Brooks View Post
I originally posted this to better understand preferences in general terms...mostly with trial documents in mind (which sets the stage for how researchers use the terms) not so much with marketing in mind. Although we will also be producing trial collateral that will be shared with folks considering participation in the trial ("possible PD" -- just diagnosed or possible diagnosis and likely unmedicated for at least 6 months and... the "controls" which are non-blood relatives willing to participate in the same panel of exams for the 3 to 5 year period so we can compare changes in clinical and biological features over time).

So, I'm interested in avoiding terms that will confuse or turn people off...yet needs to be accurate and useable.

Great help so far...

Debi
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Old 05-04-2010, 12:54 PM #32
Debi Brooks Debi Brooks is offline
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Debi Brooks Debi Brooks is offline
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Default for now...
So, at least for now and for the purposes of this initial block of materials being created for the upcoming biomarkers study, we have settled on:

PD participants and Control participants...

Everyone offered such helpful, nuanced and personal feedback--and I just wanted to say thanks for that.

Happy to share more on how we landed if needbe but as you can imagine there are many complexities in trying to get these right.

Best, Debi
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