Peg,

I couldn't agree more. However, it is not as easy as getting the word out like the Trial Finder. Pharma often wants drug naive participants and we get mired in complex psychological issues - namely the denial bubble diagnosed PWP live in. I was invited to join in a dopa agonist trial when I was first diagnosed. I was no way going to admit to having it. Think back to when you were first diagnosed? Were you ready to take on sham surgery or unproven pills? Many YO people also have families so invasive procedures involving the brain- not so popular.

In my mind, simply trying to get people to sign up without showing need will not cut it. Clinical trials need to be promoted as opportunity for something more innovative and useful than what we have now. They also need to know Amgen and facts about how little treatment options have changed in 40 years of research. I have tried carrying that message to YO forums and in chat rooms. People just say "oh really" than go on chatting. They are in such mild stage of disease it doesn't apply to them. I had people say that it doesn't apply to them because by the time they need treatment,there will be a cure!
In fact, I don't want to single any individual group out but I must point out that a newer patient oriented group records many polls and, I have read but one on clinical trials. In reading comments, it is clear the group is already aware and participatory. We need to reach out beyond our own peer group, but how to do that without scaring them off?

While we need to work on persuading people to step up for clinical trials, pharma in turn needs to design trials for more advanced stages.