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

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

Laura

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.

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?

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