[soccertese]

hard to believe but here's an interesting video about pd which states that
june 2012

UF Parkinson’s Disease Symposium 2012 – PD Research Trends

Dr. Stewart Factor, Special Guest from Emory University
http://mdc.mbi.ufl.edu/education/uni...esearch-trends

85% of trial finish late due to recruitment problems
10% of pd"ers participate in trials

[soccertese]

Originally Posted by soccertese

hard to believe but here's an interesting video about pd which states that
june 2012

UF Parkinson’s Disease Symposium 2012 – PD Research Trends

Dr. Stewart Factor, Special Guest from Emory University
http://mdc.mbi.ufl.edu/education/uni...esearch-trends

85% of trial finish late due to recruitment problems
10% of pd"ers participate in trials

]

gets into inflammation, ibuprofen might be neuroprotective but very cautious
inflammation might not be byproduct of pd but cause

[Songfellow]

I've completed 2 drug trials. I applied for 2 others but was disapproved during pre-screening because I didn't meet the criteria for the trial. One of those kinda ticked me off because I spent an entire night away from home wearing a portable heart monitor only to be turned down for the trial.

These trials can be difficult. They're not for the faint of heart. They are by definition experimental.

I really don't know what I'd recommend to improve the recruitment numbers. But I do know that I am personally compelled to do be a part of a program that is trying to make my life (and that of others) more bearable.

Steve

[soccertese]

songfellow,
your're certainly helping the cause.
on the flip side, one can ask, are there too many "minor" pd trials which diverts volunteers/$$$/neuologists/researchers from the more important trials?

not really going to make an issue about this except to say this is more than just not having enough volunteers imho. like you said, it's not easy just getting back and forth for dr. visits and/or treatments.

another issue not mentioned in that video is the large number of phase 2 trials that have failed after stellar phase1 results which might deter volunteers, especially with sham surgery involved and the GDNF trials? might discourage a few people. plus with dbs, i imagine some patients get that, thinking it will hold them over until the "cure".

do they have enough candidates for gene, biomarker and neuroprotection studies? dunno.
i volunteered for a phase3 dopamine agonist trial back in 2004 - the trial was cancelled after 6 months- and a genetic analysis and am currently volunteering for another trial.
the agonist trial was very inconvenient as the neuro was on temporary contract and we'd have to sometimes wait over an hr. for him to fit us in with his normal patient schedule.

[GregD]

The biggest problem for PD trials is that they are not publicized very well. Unless you happen to go to the instution where the trial is being conducted and your doctor happens to mention it, you will never hear of it. Unless you are active on a board like this one, you do not know about sites like PDTrials. Too many people in the 60 - 90 range are afraid of computers and do not use them.

[soccertese]

Originally Posted by GregD

The biggest problem for PD trials is that they are not publicized very well. Unless you happen to go to the instution where the trial is being conducted and your doctor happens to mention it, you will never hear of it. Unless you are active on a board like this one, you do not know about sites like PDTrials. Too many people in the 60 - 90 range are afraid of computers and do not use them.

just to be ornery, in the trial i am volunteering for, 2 older volunteers learned about the trial from their children.

[ol'cs]

What do they expect, that we're going to go to them when we can hardly get up and move??? I even avoid going to see a doctor when I am I'll,because it is too much for me some days. People who don't have PD will never know what it feels like to be as unmotivated as most of us are. Just getting out of bed in the mornin can be tough. Why would I sign up of a clinical trial unless i believed that it is not just a wast of precious time and energy?

[Conductor71]

Originally Posted by ol'cs

What do they expect, that we're going to go to them when we can hardly get up and move??? I even avoid going to see a doctor when I am I'll,because it is too much for me some days. People who don't have PD will never know what it feels like to be as unmotivated as most of us are. Just getting out of bed in the mornin can be tough. Why would I sign up of a clinical trial unless i believed that it is not just a wast of precious time and energy?

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.

[indigogo]

MJFF is working hard to solve the clinical trials problem. Sign up at the Fox Trial Finder to be matched to trials near you ....

https://foxtrialfinder.michaeljfox.org/

[indigogo]

Originally Posted by Conductor71

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

Laura -- I've been working closely with several PD organizations over the last decade, time during which I have tried to maintain a kind of neutrality of opinion, believing it was not my place to favor one organization over another. All of them are doing their best to help patients, and I sit at organizational tables to represent patients, not to do the org's bidding.

But I have now come to believe that MJFF is our best hope for a cure, and will promote them as our collective voice. Michael J Fox is more than a figurehead. He, although in an exceptional position, is a patient and one of us. He is using his exceptionalism on our behalf, and I think what he and MJFF are doing is what any of us would have done in his position. I think it is time to rally behind him as the leading voice for PD patients everywhere. If we put our collective energy into MJFF, with the financial and intellectual power they already hold, we will be unstoppable.