looking for input...
 

MJFF is working on a some projects related to clinical studies in PD and wonder if some of you might help us with nomenclature. We are interested in hearing feedback on community preferences on how to refer to PD clinical study participants.

For instance, MJFF is about to launch a clinical study that will involve newly diagnosed, unmedicated people with PD and healthy adults who are not first degree blood relatives of someone with PD. How best should we refer to these two audiences in presenting the study to the general public.

We would welcome your feedback on whether you like these and/or new names we should consider. Looking at some of the suggested pairings below, is there is a clear consensus (pro or con). Or, how might you mix and match?

Many thanks...Debi


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

Hi Debi - I like "PD participants and Non-PD participants"

thanks for asking!

I also like pd and non-pd participants. It's easy to abbreviate as pd and non-pd and it doesn't make any comparisons about health.

thanks,
paula

This is more cumbersome - but in my view, responsibly accurate:

People Diagnosed with PD and People Not Diagnosed with PD

Here, here!
 

Yes, Fiona. I was thinking that it really should be Parkinsonism but didn't want to be obnoxious. :rolleyes:

Laura

this study will help define PD
 

Laura - the ironic beauty of this MJFF biomarker study is that it hopefully will go a long way in determining the accuracy of a PD dx and the range/definition of "Parkinsonian" disorders!

cheers!

p.s. I love your picture; reminds me of an Indigo Girls song (why my name is "indigogo"): "Don't Give that Girl a Gun" !!!

how about
People living with pd/pdisms and healthy volunteers

The thing about the "healthy" is it really implies a value judgment. The fact is they haven't been diagnosed - yet - with PD, but healthy is really in the eye of the beholder in many ways.

I do like the "Parkinsonism" - it is more correct philosophically - but then on the other hand the first set of people may have actually received the classification of "Parkinson's " from somebody, so that did in fact happen.

helpful so far...
 

a couple of thoughts...we are in fact trying not to use phrasing that is too cumbersome and in general, inclusion / exclusion criteria will come into play at times that might make the general use of "parkinsonism" too broad.

We sense that from the prospective of the PD patient the concept of "healthy volunteer" does connote some value judgment--not to mention, from the perspective of a "control/healthy volunteer" patient...one could have arthritis and still be a considered an appropriate volunteer for a given study but they might disqualify themselves when they see the use of "healthy"...thinking their arthritis makes them "unhealthy"

We anticipate that it is tough to come up with universal "labels" but for the biomarker study, calling out the diagnosis might be too specific.

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

More thoughts?

idea *lol
 

newly diagnosed unmedicated PD Patients
N- newly dxd
U - unmedicated
P -Parkinson's
D- PD /Patients
-Anagram - NUPD

P -People without Parkinsons Disease
O -other who have no PD in their Family
W-without kin with PD -(kin -defined:Relation by blood or consanguinity; relatives by birth.)
S - clinical Study participants
- Anagram - POWS

R- Regular people who have had PD for way too long
U - united to find the cure
N - neurodegenerative
S -Clinical study participants
- Anagram -RUNS

Voila!
say Hello to Micheal for moi!
and that was for free!!! hahahaha

perhaps just add the word control to the non-pd so:

non-pd control participant

Debi,

I agree with you on the use of "healthy"- this can be confusing.

I think that PD-Patient Participant and Non-PD has the most clarity and neutrality.

"PD Community Volunteer" sounds nicer but I think the "community" may cause some confusion too.

-Laura

yeah - the use of "community" somehow connotes volunteering in a broad sense - not as a control in a medical study. PD & Non-PD is clear.

people with pd and people without pd

typng as i think out loud
 

for symplicity, is the nonpd control participant redundant?

another suggestion:just assume pd is understood. you could just go with:

patient participant and control participant= patients vs.controls
or
pd patient and control partcipant = patients vs.control

I would think that whatever you do it will become abbreviated to patients vs. controls in everyday usage.

I guess it's that old chestnut that psychotherapists often call their patients "clients" (that is if they themselves are not doctors). It's a subtle thing, but a newly diagnosed person might be sensitive about being plunged into the world of Patienthood, with all that implies, and more than likely is still adjusting to the whole idea of suddenly being part of this pessimistic category.

You know, in this world we need every bit of optimism and faith we can grab - I often wonder how we all would have done if our communities had rallied around us with every expectation that somehow we would get better and improve, rather than being separated out, with all voices of medical authority - even the girl at the desk - reflecting back our expected failure and demise. It's a really hard sentence to commute, even with the best behavior.

What about: Studied Group and Control Group - studied is not quite right, but something meaning investigated, or some other word like that...help me out here someone....

Some of the newer nomenclature for what we usually call PD, often meaning a breadth of parkinson's and isms, is simply 'parkinson' which includes everyone, which might be useful in terms of this study.

Parkinson participants, and control participants seems to me the most neutral and least confusing.

I am surprised that volunteer seems to be out of favour. It is the one I would add. There is a great tradition of voluntary participation in all walks of life. It is something to be proud of.

what is real
 

Now I'm thinking that non-pd control participant. sounds redundant. i think you should base your decision on what is real. That is, pwp are parkinsons patients. i would love to see the 's go. it's a nuisance and the doctor is still honored.

So what is real? we are patients, when in a clinical trial we are thought of as subjects. This is a loaded statement and i could write a term paper on why i don't like that term. Instead I'll sum it up by saying we are called subjects and treated accordingly. This is discrimination, it's demeaning, it's got the patient in a position of submissiveness and none of these manners of thinking are going to get the most out of any study. Doctors are going to have to adapt to the newly educated and articulate patient online. And perhaps reexamine what they include as randomization.

i can see it being reduced to patients vs controls anyway-in our thinking and we should attempt the most said in the fewest of words. It should slide off the tongue easily [another reasons to discard the 's. ]

i understand what you are trying to say fiona, but a roomful of classically trained scientists wouldn't -orwouldn't care. I wouldn't be surprised if someday people will have a number for a condtion and another number for the solution to it. I envy you for being able to search for healing as you do fiona; i use different terminology but believe in the absolute power of healing - i cant' figure out how much intensity to apply.We need more spiritual time, which is as powerful as you make it.

Back to the point-i don't mind being referred to as a patient. But call me a parkie and i'lll ask you not to. It minimalizes pwp.[in my humble opinion] Parkie and newbie...not too cool. i'm getting older i guess. We don't call patients with terminal illnesses like Huntington's "hunters"or "hunties." Or diabetics "sweeties"

So i think the names should be to the point, brief and easily abbreviated. Hopefully what they discover will lead to positive and meaningful terminology. that distinguishes some of us from each other. I have a tremor under my chin and at the top of my neck.. THat's the only place i do tremor, so obviously my brain damage is more at the brain stem???? i don't know but I know not eveyone has this and it probably is serious. Then what will it respond to in the treatment field...uh.....being asleep. That works.

So good luck with recruitment. could infomally call for generally healthy people so they know what you mean, but the more you learn the more terminology will be needed for subtypes/categories. Let's not take anything away from James Parkinson except the 's.And it's interesting to watch the process.

good luck.
paula

What's in name?
 

I think a lot. I thank you too, for asking.

I consider myself to be extremely healthy. I never think of myself as having a disease, or an illness but rather a condition. So I am offended by the labels of heallthy and unhealthy. Why not just PARKINSON AND NON-PARKINSON (I agree about losing the "s"). I also don't like being called a patient because I am only a patient once or twice a year. The rest of the time I am no more a patient than anyone else.

Again, thanks for asking.

Interesting discussion. Never thought of labels.....
I would use simple terminology, for eg., study volunteers were divided into three groups
1. no PD symptoms termed control
2. with PD symptoms, not on meds, untreated
3. with PD symptoms and on meds termed [B]treated
[

Girija

this seems clearest to me
 

agree with fiona & laura

keep in mind
 

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?

Names
 

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

Jeez!
 

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

Bumping this up.
 

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.

more 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

Similar trial...
 

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

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

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