H & Y = Hoehn and Yahr score
http://en.wikipedia.org/wiki/Hoehn_and_Yahr_scale

UPDRS = Unified Parkinson's Disease Rating Scale
http://en.wikipedia.org/wiki/UPDRS

These are indeed clinical "measures" noted by physicians during exams (in and away from clinical trials) and over time change. These "ratings" are commonly perceived as inadequate, blunt measurement tools and its no surprise that the terms don't come up in appointments with physicians--their usefullness is highly limited/suspect. In fact, our upcoming biomarker study (see more here www.michaeljfox.org/ppmi) is focused on developing objective measures of disease progression...something that would be useful in the treatment setting and transformative in the clinical trial setting.

The reason I asked for your experience is that as we work on projects for clinical trials we see some instances with science speak is put forth to patients and my suspicion was that would needed better ways to learn from patients about their disease stage and rate of progression (clinically and biologically)...so, my vague, general question was just to test my gut feeling that some tools were using terms with patients ineffectively. If you guys don't commonly hear/know your scores then it is safe to assume most patients don't.

Thanks for sharing and helping us learn how to best engage patients on such matters.

Best, Debi

Yes! This is exactly what is needed! We need to not only address the language, but the ambiguity of a 5-point scale which is nearly always used to screen patients into a clinical trial!

Thanks, Fox Foundation! (You, too, Debi lol)
Peg

I sincerely hope that isn't the only measures they use for clinical trials, especially when compared with a placebo. Sounds like you are understanding where we are coming from and i won't hold you to that just accept my compliment.

ha great minds think alike and then there are peg's and mine.

Thanks Debi,

For more than just asking, but also being a part of something that recognises that there are inadequacies in the way information about PD is acquired. The patient IS the key, and unless asked in the right way the questions will get fuzzy answers that are open to subjective interpretation, or misinterpretation.

The scales are weird anyway, you could be stage 4 when you get up in the morning, and practically normal when everything is working right. Even the patient is not really aware of what stage they are under the medication.

You are on the right track, this is the way that research design needs to be rethought.

Best Wishes
Lindy

Bob Dawson..as with all puzzles.....here are some clues....
we have no leader
the authors are lurking ...close by
bandido1 was once thought to be a tv personality.....love that B--.

They quote Paula on the website. Order the book? Is that the book that has been mentioned here before ?

Creative Collective? Who are these people? Take me to your leader! And clearly there is a Bandido 1, but are is there also a Bandido 2, and a lot of numbers after that?
Yes, it has to be more fun to be in the revolution that to not be in the revolution.
Parkies of the World, Infiltrate! And then co-opt the Normals.[/QUOTE]

Poor Debi; not at all the answers she was expecting! I want to say thanks for asking this in the first place- this is one of those questions I have thought about asking others, but it always feels taboo.

I am not surprised by neuros not telling us our baseline. Really it is just a snapshot of how we are doing at a given point in time; this can vary quite a but throughout the day.

I think the Hahn & Yoehr needs a serious overhaul and maybe it has been updated? The newest UPRS does measure mood or non-motor aspects; there is now even a separate rating scale for cognitive function- all at The Movement Disorder Site.

I won't even begin to comment on using paper and pencil staging or rating scales in research- imagine that going over in cancer research! We are not alone in our frustration- MS patients are fed up too. However, I sense largely because it is not considered primarily a disease for old people, they have more nuanced scales like the one that measures disease impact on socio-economic status. We just have national orgs telling us how much we'll enjoy all our "early retirement" leisure time. They also have a patient-directed scale- overall, it seems like they have too many. See this site for details. Also wondering why we are staged other than for stab at validity in research? I have read that most YOPD won't see Stage VI or V because treatments functionally suspend us at a lower stage. Will they ever get around to sub-typing us at diagnosis? This is in more in line with MS types of remitting-relapsing and a much needed way of sharing prognosis. This info would be much useful than worrying about when everything will spread to my left side.

Laura

Laura - I think Debi had her suspicions confirmed.

Fox is doing things right; it's too bad they can't do everything - but everything they do is done well. That includes regular consultation with patients. I sleep better at night (and at all of the other times I fall asleep) knowing they are on the job.

Hello all, I am classified as stage 2 on H&Y. The other one, I always want to add notes or be somewhere in the middle of the choices. They Doctors or checklist people don't quite know what to do about things. I agree that any rating scale has numerous variables, especially with a disease that flucuates minute by minute. I too was a Special Ed teacher,like Paula, where you needed to respond instantly to behaviors, taking into account the child,environment,time,bus trip to school, what they ate for breakfast, etc. Basically, you needed to know the child. I will ask what my score is next time I'm at Northwestern. I guess science has to be data based and the Doctors need scores to compare with other scores. Thanks for asking Debi.
Cheers,Fran

Forget Parkinson's for a moment. What you just read is everything that can be said about teaching children. You need to know the child.
Now zoom back to Parkinson's again. You need to know the person, and respond to that person.
And everywhere else, too.
And you can specially see how things are coming along in society if you see whether or not the "special ed" kids are being treated as real people, and there are immense struggles to help just one of them; or what happens with people who have an unpopular disease.
It's supposed to be like Franny and Paula describe it.
It's supposed to have that spirit.
I don't know how to describe it well
but it is something about people looking at each other and actually seeing each other and it is something about reaching heart to heart to bring out the best in everyone, instead of bringing out their worst, which has something to do with a sort of loving openness to the many different shapes of the heart; and to go out to the front lines of teaching or healing or protecting or rescuing; you see it all, the good the bad the beautiful and the ugly; and it is very important that you come away from it grateful for having seen so much human life up so close.
It ain't easy, but look out -- it is real.

We are well aware (and so are clinical researchers) that our current batteries of "measurements" are woefully inadequate. Efforts to refine these scales over the years (including the newest UPDRS) reflect greater appreciation for a broader array of symptoms at play in PD. And we are certainly acknowledging that this "movement disorder" is much more than a movement disorder.

We are utterly convinced that we need more informative markers (of diagnosis, of progression, of therapeutic reach)...all things that MJFF has been funding since 2002. The biology is really hard; the heterogeneity of the disease is confounding. But, we do have some good leads ($30 million later!) and this has led to the new biomarker initiative, PPMI, a $40 million initiative of it's own, to see if we can validate these possible markers.

I think many of you will appreciate what is going into the study (of 400 de novo patients and 200 matched controls). The study will document extensive clinical (everything from UPDRS, to depression, to cognition, to sense of smell) and biologic (DNA, blood, urine and spinal fluid) and neuroimaging. Some of this data will be pre-meds and some will be after meds. This will produce the most comprehensive observations of "early PD" and provide a rich data set in which to (hopefully) identify correlations and verify much more exact "measures" of PD---essential for clinical trials.

These "measures" become the "endpoints" that are evaluated in clinical trials--without improved tools, it's likely that trials may just continue on with mixed results and ultimately bring hope for progress to its knees. Can you imagine how transformative it would be if a brain scan, lumbar puncture and blood test could, with confidence, tell you what "stage" of disease you are in and how fast/slow you are progressing? It would not only improve information for patients/docs in disease management, but it would reinvigorate clinical trial investment on PD.

We are excited.

Debi