Most everyone here probably knows that trials for these three candidates are set to begin soon...Ceregene's new trial begins August of 2010, next month, cogane is set for early 2011 (I assume first quarter) and gdnf, also sometime in 2011.

We met with our neuro this month who again would like us to seriously consider doing the Ceregene trial...we are only four years into this and understandably very nervous about participating in a trial like this. Since we are early onset and in otherwise excellent health (other than those few extra twenty pounds, thanks to the mirapex), we represent a probably rather unusual, but medically compelling, candidate for PD brain surgery. We appreciate that, and also the contribution we could make to research by going forward with such a trial...

But, and there are many buts, we have very young kids. This is huge for us. And another but, half of the participants in the trial will be sham surgery....who will only be offered Neurturin IF it is deemed safe and effective, AFTER the trial ends, in two years.

Our worst fear, and it is very real: we agree to do the trial, get into the sham surgery group, spend two years waiting for the trial to end, it is deemed either not safe or effective, and the drug withdrawn. We then have waited two years, had sham brain surgery, do not get to have any Neurturin, and are disqualified from being in any other trial. We will have had PD for only 6 years at that time.

Another option is Cogane, which our neuro said his facility will be involved with as well, and that trial is coming up in six months or so. We are really not able to find out very much about Cogane, and while our neuro did not really say anything about it, he did not seem very excited about it. Perhaps he, like us, has not been able to find out much about it. Yes, we have read all the hoopla everyone else has, but that's all it has been. We have yet to see hard and fast data, statistics, or any analysis of the Phase I trial that has taken place. Anyone have that and is willing to share, we'd really appreciate it. Obviously, we would prefer participating in a promising trial that involves taking a pill over having any kind of head surgery...sham or otherwise.

And then there is GDNF...who knows what type of candidate they are looking for with this trial...or whether we would even fit that criteria.

We realize many here have been grappling with PD for a decade or more, and we are early in the game, as they say. Does anyone have any thoughts about which trial, if any, might be best or better for a PDer at our stage, with little kids, and circumstances? What would those reading this do, if you had the choice to participate in one of these three trials?

In defense of the Ceregene trial, our neuro did say that while the earlier trial did not meet the primary endpoints, something like 24 out of 27 secondary endpoints were met, and several of the participants "looked really good", for what that is worth. It's compelling, and on those days when you have a really bad day, or several bad days in a row...brain surgery doesnt' seem such a bad idea.

Any thoughts, comments, we'd like to hear them all. I am grateful we at least have the issue before all of us, which is, golly, which trial would I like to try to participate in, as opposed to having no trials going on at all, or only trials for yet another agonist or levodopa formulation. That is something, albeit an enormously difficult decision.