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04-28-2010, 07:57 AM | #1 | ||
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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 |
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04-28-2010, 09:30 AM | #2 | |||
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Hi Debi - I like "PD participants and Non-PD participants"
thanks for asking!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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04-28-2010, 09:37 AM | #3 | ||
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In Remembrance
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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
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paula "Time is not neutral for those who have pd or for those who will get it." |
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04-28-2010, 10:07 AM | #4 | ||
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This is more cumbersome - but in my view, responsibly accurate:
People Diagnosed with PD and People Not Diagnosed with PD |
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04-28-2010, 10:39 AM | #5 | |||
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Senior Member
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04-28-2010, 10:59 AM | #6 | |||
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Senior Member
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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" !!!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony Last edited by indigogo; 04-28-2010 at 11:02 AM. Reason: add ps |
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04-28-2010, 11:20 AM | #7 | |||
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Member
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how about
People living with pd/pdisms and healthy volunteers
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I have a post-encephalitic neurological disorder, but it does NOT have me! |
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04-28-2010, 11:36 AM | #8 | ||
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Member
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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. |
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"Thanks for this!" says: | Conductor71 (04-28-2010), lou_lou (04-28-2010) |
04-28-2010, 11:56 AM | #9 | ||
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Member
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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? |
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"Thanks for this!" says: | Conductor71 (04-28-2010) |
04-28-2010, 11:57 AM | #10 | |||
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In Remembrance
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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
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. Last edited by lou_lou; 04-28-2010 at 12:24 PM. |
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