agree with fiona & laura

These terms will be used when reaching out to those newly diagnosed with PD. Will they understand "control group?" I think "control" would be problematic.

Regardless of how we feel personally about the terms, in the end, what descriptive words and/or phrases will be most clear to the target group?

Excellent Girija, simple, too the point, correct and without bias.

I never thought the original request would stir that much interest, but it has.
Here's what we started with:

PD Patients and Healthy Volunteers
PD Participants and Non-PD Participants
PD Patient Volunteers and PD Community Volunteers
PWP (People with Parkinson’s) and PD Partners

then added these comments:
What about from the perspective of the control...what do you think catches their attention and is appropriately respectful and inclusive?

So I am trying to understand why one would want to get away from scientific terminology - Participants with PD (qualified by newly dx) and Control group, which everybody learned way back in Scientific Methodology 101, that a hypothesis needs a control.

So reading between the lines, you must be trying to encourage those NOT dx with PD and without a direct genetic line to join this trial - right? Or is the newly dx that concerns you?

If you're looking for some marketing technique, why not advertise for the newly dx PD group to "bring a friend" whom we think does NOT have PD - . . .yet - but could have lost only 50% of their neurons and as yet are asymptomatic? I'm being facetious, but it's factual..

Pay them a stipend and they'll flock in (the "healthy" ones)

I vote for Participant (with PD - Non-medicated) versus Participant - control group (which most everybody can define).

Good luck!

Peg

I would like some more discussion on this. I probably soundned prety sarcastic in my last post, but PD for 16 years makes one occasionally "sarcastic."
You lurkers - why not post on this one? There are no wrong answers - just need your thoughts.

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

White Rats and Brown Rats?

But a little more seriously, the fact that what seemed like a simple decision turned out to be complex is a sort of snapshot of what we're up against.

Hey, if they went with my suggestion could we all get color-coded tee shirts ?

OK a serious one-
Trial Participants and Control Participants

Is the "PD" label intended to be inclusive of such conditions as essential tremor and atypical parkinsonism?

I think there are many comments because PD trials don't always have controls that don't have PD.

Participant would be non-offensive to both but it has 4 syllables ...lol. They are both participants tho so pd and non-pd is easy. But patients and controls is easier to say.

just another thought,
paula

edited to add: i guess patients doesn't define those with possible pd or undiagnosed pd. i must have skimmed - so now i am back to thinking participant - it applies to all

so pd participant , undiagnosed participant and control participant might work

My husband and I are in an ongoing trial for biomarkers: person with pd and family member not related by blood

(it's part of the follow on to precept-postcep--scientists are getting a lot of mileage from the 2002-2005 precept trial!)

jean