[paula_w]

As you hear occasionally, we have been very busy, and for interested persons who can possibiy make it, the PAN forum is coming up in February, and they do give scholarships to attend ,if you apply, but it's first come first served.

I would recommend it for several reasons - if you want to know more just send me a private message. Here I will say that we are on the verge of what I honestly think is going to be a noticeable change in practices and policies, with patients being a necessary seat at the tables and roundtables with patients becoming routine.

I could scramble an egg neater than I posted this thread! Where am I ? lol I believe I left out a few Key words as they say.
SECOND UPDATE

We have been invited as PD pipeline project to write an article in the medical journal published by ASENT coalition about Ethics and Neuroscience or something similar and the journal is named Neurotherapeutics.

Parkinson Pipeline Project, after more than five years with no budget, has been getting some sponsorship ,which is a good motivator i guess as now everything is happening at the same time. PDF works with us closely as well - we've been having weekly meetings for years - we are so slow! lol - sometimes multiple meetings each week.
There are communications going on between board members and patients - and patient advocates [not just a philanthropist] are now on the PAN board. They are dealing with patients and trying to help us...

I'm tired of playing poker.

Here are some questions we'd like anyone who wants to - to please respond to some, or one or however many you choose,through private message here to Linda H. or Sheryl J, Carolyn, or me - here are a few more key words i left out = private messsage only if you choose not to post here! yikes

There are many questions, so it will be interesting just to see which questions interest you too.
and thanks if you respond.....

This is open to all. Anyone can voice an opinion about the questions, instead of "why did you volunteer"- think-" why would you volunteer?'. Clinical trial par t ipants of course can answer from the experience.

There's more but this is already a lot.
More tomorrow...paula
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Interview questions about Ethics in neuroscience
We need many quotes to weave in and out of the article. It's due by Feb. 15 th but we have two events before then and so it's really due by the end of Jan.

The entire journal is being devoted to this topic. We need you to speak.

Why did you volunteer? Was either access to treatment in the randomized study, or access to treatment in extended open label studies important to your choice? How did the access to new treatment incentive compare to the value of science in your decision? Or to what you would learn from the participation?

Did you get placebo? When unblinded, what did you think you got before unblinded? Did you experience change in symptoms, how long did changes last?

What was primary outcome? What was your change in baseline to follow up? How long were you tracked, did clinical improvements continue to increase, decrease or stay the same?

Were there other key measures. Were imaging or other markers used?. How did they change over time? Were you satisfied with the feedback and reporting to you of findings from your data, and with privacy of data?

Did the informed consent (IC) cover how you would be treated if the study was terminated early? Did the IC explain the risks? What were they? With respect to unknown effects of treatment? with respect to surgery? Was the placebo effect explained to you? And were you given any strategies to minimize placebo effects?

Did the sponsors of the study explain how you would benefit if the trial proved successful and how you may be harmed if there were problems with your treatment or with the overall study (for surgery was it explained that acceptance of this treatment would likely make you ineligible for future experimental trials?)

Would you be less interested in a study sponsored by a company with significant ethical violations (conflicts of interests)? Failure to disclose data to advance science or to monitor safety in community settings, failure to live up to agreements with patients about conditions in the study or with ongoing clinical tests.

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It's time to speak out. People are focusing on your future, which can only be made possib le thru clinical trial participation - except we aren't lab animals, we are human beings. The human element can no longer be kept in ignorance and treated with no compassion, as if it can be turned off in the participant. That's the difference between people and animals - we seem to be a tad more advanced than animals with the added components of intelligence and emotion.