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" !!!

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?

people with pd and people without pd

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.