[Debi Brooks]

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

[jeanb]

I'll be volunteering for Dr. Holly Shill in Arizona. She's one of the PPMI researchers - and my doctor.

Jean

[pegleg]

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

[EmptyNest68]

Originally Posted by jeanb

I'll be volunteering for Dr. Holly Shill in Arizona. She's one of the PPMI researchers - and my doctor.

Jean

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!

[GregD]

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.

[CarolynS]

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!

[jeanb]

Originally Posted by digger

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 have done my part in five trials and the last meant that I can no longer participate in clinical trials.

Digger, you are one of my heroes. You took a huge leap of faith and joined a placebo-controlled brain surgery trial. You speak to one and all from the heart and from experience about the importance of participating in clinical trials. Thank you.

Jean

[Debi Brooks]

We don’t have exact numbers for clinical trial participation in PD but the most generous assumptions would put it at 10% (I think the number is more like 3%) of patients participate in some type of study in the course of their PD. Trial sponsors have very low expectations for the PD community – expecting only 1 patient per month per site. This compares with trials in some (not all) diseases where trials are filled in a matter of days. No matter which number you use, it is low and acts as a real disincentive for drug development in PD.

MJFF has been working in this area for the last 18mos to support recruitment for PPMI our large biomarker study which is now underway. If you happen to live near one of the investigational sites, you might have been to an education salon, or seen local media pieces, or some brochures, etc. This work has led us to expanding our efforts for clinical trial recruitment more broadly. We are in the process of preparing new tools and will be launching a public awareness campaign in the coming months. But, suffice it to say that the need is great (nearly 100,000 volunteers are needed for trials underway right now).

Michael Fox made a great point when we were working on publicity materials for PPMI…he said, as patients, we rely on so many smart and dedicated scientists to study, explore, hypothesize, investigate…and, after years and many dollars of investment, there is a time when something is actually really to be evaluated in a patient---this is the time, in fact the only time in the whole process, when the opportunity and burden fall solely to the patients. No one else can do it for us. If we don’t step up and raise our hand to participate, we can’t learn and we can’t get better treatments. Patients need to/can be part of their own solutions here.

Having said that, we are well aware that participation in trials comes with significant challenges. And, we know that trials aren’t for everyone by any means. We appreciate that some dedicated folks will never get involved in trials – that’s their choice. But, I think his message can be extended beyond clinical trial participation. Get involved. Do something that fits you. Be part of the action. There are many things patients can do. Get educated about the disease. Get to a movement disorders specialist. Support research. Raise awareness. Join Team Fox (shameless pitch!). Volunteer for a clinical study / trial --- by the way, not only are patients needed but healthy controls are needed too!

Debi

[Debi Brooks]

If you missed Michael J. Fox’s conversation on Parkinson’s with Dr. Sanjay Gupta on CNN this past September, tune in on December 24 when CNN will be re-airing the special at 6 p.m. (US ET). In this special report, Michael speaks about his experience with Parkinson’s disease, the Foundation’s landmark study to identify PD biomarkers, and the crucial need for greater participation in clinical trials.

As a reminder, the special is also available for on-demand viewing on The Michael J. Fox Foundation’s Web site.

http://www.michaeljfox.org/newsEvent...rticle.cfm?ID=

Debi

[pegleg]

Debi
I was searching for info on orthostatic hypotension (a sudden drop in blood pressure upon standing),, this occurs pretty frequently among some PWP.

Anyway, I found this website "Clinical Connection" that uses modern technology (facebook, twitter, etc) to keep potential recruits informed about currently recruiting clinical trials...

I thought you might be interested in using this new-fangled resource:

http://www.clinicalconnection.com/Pa...Study8816.aspx

Peggy