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Old 01-25-2007, 03:38 PM #8
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default your opinion counts

I agree with all of you but feel as Thelma does. At this stage it doesn't matter what the cause is as much as it matters that I get symptom relief, preferrably neuro regenerative.

Greg, there is an article by Dr. Anthony Lang calling for exactly what you are saying. I couldn't find it on this computer, but he calls for more basic research due to trial failures. Dr. Lang authored the Amgen GDNF trial paper.

This seems like a good place to tell you some of the things that have been going on in an effort to get YOUR voices heard.

Yesterday the PDF held the first in a series of round tables on including patients at the table and improving clinical trials for all stakeholders. This is the third Round Table to result from the GDNF halt and Amgen's callous sacrificing of the patients for which GDNF worked safely for 3+ years. One was held with the clinical trial researchers in San Diego last year at the AAN conference and the other was held by the Fox Foundation in New York. I am humbled to be a part of these round tables and can say that I attended both last year and listened by phone yesterday.

All stakeholders in the drug development process were there. Neurologists, researchers, bio tech, academcia, the FDA, the NIH, clinical trial coordinators, I know I am leaving people out. Three patients attended who had been in trials, three patient consultants for the FDA PD sector observed, and three of us listened by phone.

You can imagine the wealth of information and opinion you can share at this type of Round Table. And the best part of all was that the end of the day recommendations are things we have been doing for a couple of years.

So Greg, you keep reading - before you know it you will realize that you know more than some people that would truly surprise you and that they are finally starting to "get it". But we have a long way to go.

The topic yesterday was developing Patient Trust.

Paula
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"Time is not neutral for those who have pd or for those who will get it."
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