I agree with you in theory but feel that we need to take some culpability for not choosing to participate earlier on in our disease course, I think denial holds many of us back. Then by the time we figure that out we are past the point of being eligible or capable of participating. Many trials want de novo patients and these are the least likely people to participate especially in Young Onset.

This is the spot where I usually blast the myriad "advocate" and "patient support" organizations. If we had but one strong collective voice, blah blah

Doctors don't feel any sort of moral obligation, and in the end it is the researcher and patient who lose out. Question is how do you reach out to the newly diagnosed and say "Geez, sorry, not to worry; the meds will trick your mind into believing you are normal...now, quick, before it is too late let's add the placebo effect to your mind's bag of tricks" . I sometimes wonder how we stay sane.

Well, I did my part and posted that 30% stat on Facebook's YOPD Group's page. I am alarmed at how many are neuros are pushing DBS on younger patients- one person said her doctor said when sinemet only works for 2 hours it is time for surgery. Not one person reports that there neuro suggested clinical trials first or warned them that they were making themselves ineligible for any potential better or disease modifying treatments. I gave them the lowdown, but they don't get it. They wait until they can no longer take it then do DBS. Only thing that matters is do what doc says; don't think at all or question anything. Funny...they all seem happier, delusional perhaps, but enjoying life more.