it is unfortunate that the introduction to this valuable resource seems to scream, "Patients need not apply!" evoking some understandably negative responses from dedicated patient advocates. Perhaps the project could have been publicly introduced in a more inclusive way?

I think it is okay in a forum like this to limit scientific discussion to the scientists, but what about including a structure for communications with and by patients. The ALZ Forum (http://www.alzforum.org/ )is cited as a model (really a wonderful resource) states :

" We very much welcome our readers' participation in all aspects of the web site. "

http://www.alzforum.org/abo/mis/default.asp

So if you look at their scientific discussions -- transcripts or web casts are available online - therer is an opportunity for anyone to make comments or ask questions -- and you will see patient advocates included along with the scientists. for example: http://www.alzforum.org/res/for/jour...asp?liveID=167

Hopefully the Fox rresearch forum will follow this model, and also be open to new ways of involving patients in the research process.

There is more information on the Fox project at: http://www.pdonlineresearch.org/about.html

one of the issues discussed here is the slowness of traditional scientific communication and cliinical trial results- somethiing patient advocates have complained about for years. This forum will address these problems.

"The speed and quality of these decisions are limited by the way scientific knowledge is communicated today: new findings come to light through the slow scientific publication process, and are analyzed by the scientific community in small conference sessions and private discussions. Funding and investment decisions are likewise based upon limited discussions with handfuls of experts. "

"To increase the efficiency of these processes, in the spring of 2009 The Michael J. Fox Foundation will launch PD Online Research, a web community of scientists, industry professionals, grantmakers and financial investors dedicated to advancing the treatment, prevention, and cure of Parkinson’s disease"

If they can meet these goals, what more could we ask.... only that we also be recognized as members of the community ?
linda