I came across this breakout group report on Clinical Trial Recruitment from the MJFF scientific advisory board , suggesting ways the MJFF should get more involved in promoting clinical trial participation.
see:
http://www.pdonlineresearch.org/resp...al-recruitment

An important issue for sure, and also one that the Parkinson Pipeline Project - a patient advocacy group (pdpipeline.org) and the Parkinson's Disease Foundation have been working on collaboratively for some time.

PDF also leads the Steering Committee of PDTrials.org - a coalition of national PD orgs in consultation with medical and patient groups - that provides information on currently recruiting PD trials and encourages more trial participation among PWP.
(see http://www.pdtrials.org/en/about_PDtrials_committee)

So I'm wondering why duplicate efforts? I hope the message will be that we all need to work together to achieve this goal. and encourage greater cooperation among the orgs and that PWP will also be meaningfully included in any effort or program that affects us.

See:
Breakout Group: Clinical Trial Recruitment
full text at:
http://www.pdonlineresearch.org/resp...al-recruitment
excerpt--
"Beginning in 2010 MJFF will increase its focus on addressing the issue of clinical study participation. Many clinical studies face significant hurdles in meeting recruitment goals and/or recruiting in a timely fashion. Leveraging the insight and experience of the Foundation’s Scientific Advisory Board, MJFF developed a breakout group to address two issues: 1) identify the challenges clinical studies face in recruiting PD and controls subjects and 2) generate ideas MJFF can implement to improve awareness of clinical studies among the PD population as well as increase subject engagement in clinical studies. ...." (see the full text)

i have questions:

what does holistic mean? does that mean all stakeholders? is it marketing ads or science..how will you do the recruitment? Will it be sold?

Are there org mergers being considered? If so, do you think patients have a need to know about it?

There is an organized group who has been at this.... for a decade. have you read the pipeline site? so we are interested in what you mean; too experienced at this one for no explanation to be provided.

Communication is a courtesy.

that's my opinion not the forums being spoken for at all.

paula

I understand your questions, Linda, but given the (still) low numbers of pwp participating in clinical trials, I am in favor of any group presenting new ideas or ways of improving awareness about clinical trials.

We have had many spirited discussions in this forum about the pros and cons of participating in clinical trials. As many in this forum know, I have been in quite a few clinical trials and am right now in two ongoing trials. I just hope that with greater awareness about the existence of clinical trials, more people will look into different trials and understand that doing this is for themselves and for all of us who live with PD. Remember that there are many trials that don't involve new drugs - like exercise trials, or trials for biomarkers.

And yes many people live far from study centers, and that is a is a barrier to their participation. But not everyone faces such barriers. And there may also be trials like at the NIH or the IND where travel is provided to the participants.

Is the system perfect? No. Are some of us working to make the system better? Yes. Right now it's the only option we have. And with so few clinical trial participants, the movement of new treatments in the pipeline is grinding to a halt. Our wait grows frustratingly longer and longer and longer.

[SIZE="5"]Linda asks:So I'm wondering why duplicate efforts?

I have wondered this same thing for a long time, but on a broader scale than just clinical trials. Can anyone tell me why we need so many national PD organizations duplicating efforts and wasting time and money while the clock is ticking down for those of us desperately hanging on for the cure.
At the very least, each org could specialize in what it does best, whether research, providing direct services to patients and caregivers, or whatever.

I agree wholeheartedly with Linda that we all need to pull together to achieve our shared goals. This means having the orgs meaningfully include PWP in any effort or program that affects us."


sheryl

Linda,
MJFF has taken a very different approach towards research than most funding agencies and I think it is starting to pay off. May be they can do the same to clinical trials too.

girija

So what's the buzz on this today? i gathered a few opinions on it. Should we, as patients, actually try, for one day, to see if we can spin our view and what we have done for the pd commuity? We can toot our horns, constantly and are sure we are superior. It's like being up against a big bullying cousin or uncle or grandchild.....metaphorically mostly.

That works in business, investments, celebrity [extreme I'm special factor]is a unique subject that i'd like to talk about. It's like we are up against the ..strength only a safe feeling celebrity can master. Many don't. But Michael has. So I think we should have some comunication from him without his celebrity being the focus, but rather what we all think.

I don't know how, he has been pretty good as a ghost. it would be faster if we were courteously given a more direct communique. i'm very flexible.

thank you,
paula

I think that Girija is right on the mark.

The MJFF Patient Advisory Council met in conjunction with the MJFF Scientific Advisory Board late last month in Charlotte, North Carolina. It was an exceptional experience. Each group had their own agenda, but we came together formally to discuss clinical trials recruitment for one breakout session (as reported in PD Online Research). It was an open and frank conversation about the challenges facing both patients and recruiters. (Note: the patient council spent our entire meeting on the topic of clinical trials - the MJFF staff got an earful!)

Clinical trials recruitment has emerged as an area of concern and engagement for MJFF because of the role they are taking in recruiting for their long term (5 year), data-base-building, biomarker study. As they worked to solve the recruitment challenges presented by this one study, they organically understood that what they were learning could, and should, be applied to all clinical trials.

MJFF has talked with PDF about PDTrials and the Learning Institute; I encouraged Debi to look closely at what the Pipeline has accomplished; MJFF is actively seeking patient input in their decision making. Whatever they decide to do, you can be sure it will be innovative, patient friendly, and proactive.

On the last day of the meeting, the patient council listened as the researchers passed the microphone and each stated what they thought was the most important area of PD research right now. The topic of clinical trials was raised again, including patients rights - especially if the trial goes awry in some way. One scientist, a Harvard epidemiologist, said that he felt that the community, society, was responsible to care for patients who give themselves to science for no more reason than altruism. He got some push back - mainly because others talked of legal requirements and university regulations, but I was encouraged that this point of view was spoken so openly and taken seriously.

Although not part of the discussion on the last day, I felt welcome in the room - and at the table. I know first hand that the best researchers in the world are concerned about the things I think they should be concerned about; that they understand the urgency.

I was again reminded, and the researchers clearly vocalized, that MJFF's power to convene is paramount - they were obviously grateful for the opportunity to come together to discuss their research across disciplines and around the table.

I share the concern of organizational duplication, but in this case, more is definitely better.

Thank you carey, i hope it becomes something we can count on...regular updates. speculation is becoming too tedious for us sickies. ....do you know what i mean? zero tolerance, no energy.

Well now we are at point x.
paula

I've said it before, and I'll say it again, I am VERY glad that you are on the MJFF Patient Advisory Council!

I'd love to hear more about the MJFF Patient Advisory Council's discussions about clinical trials!

Jean

Carey, MJFF already has my vote for leading the research charge, which has to include improving clinical trial recruitment and retention. In a relatively short time, they have proven their ability to amass the money, attract the top researchers, and bet on the right "horses." It is due to their Hercculean efforts in this area, that we are that much closer to a cure than we were 10 years ago. My money and my heart are on Mike!
sheryl