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12-13-2010, 08:53 AM | #1 | ||
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http://www.chron.com/disp/story.mpl/...k/7335132.html
Some of you might have seen a recent op-ed in the Houston Chronicle by Michael J. Fox drawing attention to the need for increased participation by volunteers in clinical trials. This letter will run in additional markets in coming weeks -- particularly in regions where our new PPMI study is getting underway. As many of you know, the PPMI study seeks to follow very early stage PD patients and non-PD volunteers intensively for up to 5 years in an attempt to collect reams of data (clinical, biologic and imaging) to better understand disease progression. Such assessment could help find biomarkers of progression--that is the hope--and dramatically improve the design and speed of clinical trials for disease modifying therapies. One hope is these very early stage patients will learn about such opportunities when they connect with experienced advocates in the PD community (like you guys!)...please help us educate the newly diagnosed about their disease, about getting engaged, about considering being part of the research solution by participating in trials. Debi |
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"Thanks for this!" says: | Conductor71 (12-13-2010), soccertese (12-13-2010) |
12-13-2010, 10:12 AM | #2 | |||
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I'll be volunteering for Dr. Holly Shill in Arizona. She's one of the PPMI researchers - and my doctor.
Jean
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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"Thanks for this!" says: | Conductor71 (12-13-2010), EmptyNest68 (12-14-2010) |
12-13-2010, 08:46 PM | #3 | |||
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Thanks, Debi and MJF. I first learned about clinical trials when I attended my first PAN forum. It has to come through social networking, PSA's, and word of mouth.
I just had a golden opportunity in early November to be part of a national webcast on clinical trials - 1st Annual National Aware for All, sponsored by CISCRP. You just have to be at the right place at the right time, I guess. Peggy |
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12-14-2010, 03:15 PM | #4 | |||
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Quote:
Jean I'll be seeing Dr Shill in january! she was my original PD doctor, at Muhammand Ali institute. Since then, had one guy who was okay, but i really missed Dr Shill. When she moved she dropped off my insurance. I am really looking forward to see her! |
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"Thanks for this!" says: | jeanb (12-14-2010) |
12-17-2010, 07:54 PM | #5 | |||
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I have participated in a few studys but no actual clinical trials. Most of the trials that have taken place in my area required not having started Sinemet yet. It's difficult to participate when you don't meet the requirements.
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"You can't fight City Hall, but you can pee on the steps and run." --Gary North |
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12-18-2010, 08:45 AM | #6 | ||
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I always wonder why we get a blank stare, like why are you asking us to do this and I am surely not going to do this, from the audience when clinical trials are the presentation; support groups. I participate in an educational mode, rather than social, in another Parkinson's board. About two weeks ago I started a thread asking, clinical trials, yes or no. In the initial post I asked such questions as, "Have you ever participated in a clinical trial?" and "If not, why not." It was sad to see only three responses from a group that is many hundreds. I went back in and did a response of my own asking, "where is everyone, let's hear from all of you that have participated and for those who have not and why not." Zero responses other than the initial three. And we wonder why only an average of 1% of Parkinson's patients are involved.
I have done my part in five trials and the last meant that I can no longer participate in clinical trials. I was at the NIH on a panel in May 2010. The focus was to present all sides of clinical trials, including a patients perspective (my job.) The audience was made up of invited CEOs and other heads of foundations and charities. Ronnie Todaro presented for PDtrials.org. At the end, because there were two presenters talking about PD one women in the audience didn't see this as a message to the audience to think, I wonder what our percentage of participation is, do we promote participation well, I should find that our when I return to the office. She complained about the presumed focus on PD only, what about other diseases. When the actual message was to go home and find this out, are we doing enough to promote clinical trials. Of course, the point Ronnie was making by presenting pdtrials.org was to present a "template" of sorts that these org heads could take home and put into motion for themselves. This was the first presentation of its kind and surely Story Landus will use that day the next time she puts such a presentation together again. Of course, PD was not the only disease presenting! |
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"Thanks for this!" says: | paula_w (12-18-2010) |
12-18-2010, 10:47 AM | #7 | |||
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Quote:
Jean
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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