Quote:
Originally Posted by jeanb
I've quoted that stat for too long! 
Better stated: fewer than 1% of the estimated number of people thought to have PD in the US participate in clinical trials.
I'd be curious to learn if we asked every pwp that we know personally or in our support group(s) including polling this board, what % were identified to have been trial participants. And of those who participated, how many had participated more than once. Personally I think that the 1% number is high because of the people who have participated in trials multiple times... And if that is true:
1. the % participating is lower than 1%
2. do we have a truly representative population participating in our trials? |
Jean,
No worries on the quote; I'm simply annoyed that with so many advocacy groups on our behalf, this is all they can present? Just expressing my frustration on the lack of data on us.
I think that what you present as questioning just how this small group can truly represent a cross-section of 'us' is one that also needs to be addressed in research design. Who oversees the standard data design anyway? Is it the American Academy of Neurology?
Laura