Gems,

Having a name that begins with a p, I'm curious about who you are addressing the reply to.

Willingness to undergo sham surgery is as individual as anything else. I'm not sure how you completely prepare for it. If you are in a trial and on the placebo, and the drug company decides for any reason to cancel the trial, you've just undergone major surgery for nothing.

There should be a safety net for both the physical and psychological consequences that may result from that.

Also, sham surgery requires more anesthesia to keep people from knowing who got the real stuff and who didn't.

IF it is me you are addressing, then I would sum it up by saying that the current system of conducting clinical trials isn't working well enough or quickly enough. The GDNF cancellation was recognized around the globe as a trial that educated and woke people up in our community. It showed us that the sponsoring company can be imcompetent about some things, that they can be arrogant and appear to lack compassion. But mostly, inspite of FDA approval to continue compassionate use with the participants, it showed us the patients are not the top priority. That's not a safe place to be when you have equipment in your body and no drug to run through it.

I wish you could help us too. One of the best things a pwp can do to help himself or help others is to participate in a clinical trial. But before you get to see if it works, you have to go through the surgery. We are looking at the ways they are trying to get around this.

Hope that addressed your comment and you probably weren't even talking to me.
paula

edited to add this link - way over my head in price and content but just sharing it to let you know they are working on these things.

http://www.exlpharma.com/eventAgenda.php?id=77