Second time posting.....grrrr.
I would like to include an ethics component to our forum project, and consider us as watchdogs to a high degree. Many activities need watchdogs and are crossing ethcial lines. For example, why are paid consultants needed in addition to all the other professionals involved in clinical trials [like, for ex., I think Olanow was a consultant for the Cere 120 trial] Do these consultants get paid no matter what the result? I assume they do, and Olanow listed a conflict of interest for the Cere 120 trial. I would like his role defined and justified....a reasonable question.
Patients must be included in trial design - not where they are not informed - but where they are justified in asking questions about who is getting paid for what, who is setting end points, what can we do that is more productive with the placebo effect, why aren't they eliminating likely non-responders? And on and on.
Why are high paid consultants always needed instead of paying upfront for participant expenses? And the IRBs....the untouchables? We need to hunt them down and ask questions about them. This we can do.
Where is the follow up to all of the failed trials? Pipeline has been invited to submit an abstract for a poster presentation for the ASENT conference, a multi -group advocacy coalition. we are planning some in depth analysis of the failed clinical trials, which may extend back to immunophillins.
Any participants from failed clinical trials who would like to comment or have something to help us in this analysis are needed and would you please contact me here through pm or email me at plwitt8385@ aol.com to help us?
I don't know if we will hear a response from MJFF...I rather doubt it. But that shouldn't stop us from attempting to set up an email listserve, which we were planning anyway with those involved in their onlinepd research as a means to participate and ask questions. It's like sitting at the kiddie table at Thanksgiving dinner and I don't like that so much. But the patients "included" should not be the same patients that show up on all the boards and councils or those who are wealthy. There are some expert patients out here, or should they be referred to as "clients" or "consumers"?
I wish I could trust more. I understand that PD is not going to be easy to solve and may never be solved. But it can't be a racket; the practices involved in trial design are too suspect. Shutting out patients is going to create loss of hope. Patient groups also need to work together. There is an element of competition and attitude within patient groups as well. This is unacceptable and not welcome in the neurotalk group.
If one doesn't understand advanced PD and the feelings of paranoia or anxiety that sometimes accompany posts or reactions, they should not be working on this project, or possibly any PD projects. This is difficult enough; constructive criticism is welcome tho - necessary in fact.
If you agree, I'd like to call a meeting on Tuesday at 4 p.m. ET. Lee says that is breakfast time in Australia, but would having it later be too late for Europe? We have set up a yahoo room and could meet there. I' m done moving so am up for trying Skype if you all would like to. If we don't get enough people in yahoo we can have another chat here but they do get confusing. We could improve it by using all different color types per person and always addressing the person you are responding to. We could even try carrying on one conversation at a time, but that would take forever.
The private forum has not drawn much response, even tho it is the easiest to use. iF you would like to become a member of the private forum, pm me or ask publicly and we will add your name.
so Tues at 4 again, here unless we get a lot of yahoo sign ups ....rick's wiki and a registration are on the table, i think ethics should be incorporated and that a listserve should be on the table to participate in the fox online research forum...albeit it not without regrets at not being more included.
- Let's try to come out of this next meeting with an action plan to begin immediately.
- Let's get serious about claiming our rights to be involved in clinical trial design. I cannot in good faith recommend clinical trials at all until we are more involved in the design and patient rights are accepted and applied. Pipeline and others have written a bill of rights that is creeping at a snail's pace within PDF. Great things have come out of it and the training now being provided by PDF is exceptional. Now what can we do to get what we have written and trained for in motion. The time is now.
- Let's weed out the breeches of ethics; the applying for 5 yr grants and using every second of the 5 yrs and then reapplying with inconclusive results. I don't plan on being cured. Those of you on fire for current research that are 10 to 15 years behind us in age and PD onset, you have time for a trial that begins today to possibly help or cure you; you have a sprinkle of trials already begun that statistically won't make it past phase 2.
- I am not being negative. I'm realistically using all the logic I can muster to light a fire with what fuel we have left.
See you Tuesday at 4 ET unless someone has a better alternative, here again unless many sign up and want to use yahoo or skype.
http://health.groups.yahoo.com/group/ParkinsonsProject/
Thanks and don't ever under- estimate what just a few of us can accomplish,
paula