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