[pegleg]

Here's a guy who is doing something about misdiagnosed or totally missed PWP's. This has been mentioned here before, but I am validating it because of the people working on this effort.

At University of Alabama (Birmingham) there is a smart, young research doctor (transplanted from Boston) who works with worms, fruitflies, rats, etc. and is finding out lots of details about what PD really is all about.

Dr. David Standaert is out to find the cure (tag that name because I am sure you will hear it again). I met him when I spoke at a symposium -- really nice man and REALLY dedicated! Dr. Standaert has been funded by the Fox Foundation to do a resesarch study to help find a blood test or scan that positively diagnoses PD.

The Parkinson's Progression Markers Initiative (PPMI) is a first of its kind. This is a human study that Standaert says "requires a lot of commitment" for 5 years, but the information will be shared internationally. He is recruiting 20 very early diagnosed PWP who have not yet taken ANY PD meds, and 10 healthy people willing to be the control.

Quoting from the Fox site: "
The goal of the PPMI study is to identify one or more biomarkers of Parkinson’s disease. The discovery of a biomarker of Parkinson’s disease is critical to the development of new and better treatments for PD, particularly treatments that could slow or stop the progression of the disease, something no currently available treatment can do.

Dr. Standaert was recently on the local news giving this number to call if interestedin participating:
1-877-836-8108 How cool is that?

And the Fox Foundation is behind this all the way. They are even going to create a PPMI website with detailed information on the study, so bookmark this link and check back periodically.
http://www.michaeljfox.org/living_PPMI_overview.cfm

Thanks!
Peggy

[lindylanka]

Just read Dr David Standaerts idiot proof guide to what is in the PD pipeline in todays PDF newsletter. very clear and effective reference for all of us who get confused by the many trials.......

There is an interesting reference to naltrexone (another patient first).

Peggy, Like many others I will be watching out for news of this study, but I have to say that I am a little disappointed in the small size, or maybe I have got it wrong? With the billions that get poured into research I would have thought that this is such a vital piece of research that it could have been bigger.... but I am not criticizing, only asking....

Lindy

[jeanb]

Lindy,

They are looking for 400 de novo pwp and 200 controls. My doctor is one of the researchers involved and she's asked me to come & speak at her center about clinical trial participation. I said i'd be glad to help, and I've asked to go through the same tests that the pwp will go through, so I'll know exactly what we're asking the pwp to go through.

jean


"PPMI requires the participation of 400 Parkinson’s patients who are newly diagnosed and are not currently taking standard PD medications and 200 individuals who do not have PD. Participants must be at least 30 years of age. They will be enrolled at about 18 Parkinson’s disease centers — 14 across the United States and 4 in Europe — over approximately two years."

[pegleg]

Jean
I think the numbers I quoted were just for the Birmingham area. I had just never seen a researcher take enough interest to talk on the local news and send the tellephone number! Sorry to mislead you, Lindy.

And do you know how difficult it will be to find newly dx who have never taken PD meds? Well, all I can say is goood luck! I would be putting my telephone number out there, also.
Peg

[indigogo]

This is the huge biomarker study we've been discussing here for months.

Peg said, "And do you know how difficult it will be to find newly dx who have never taken PD meds? Well, all I can say is goood luck!"

Peggy - the Fox Foundation is sponsoring and funding this entire effort - the first time they have ever done anything like this. Their commitment is huge, they have a professional staff dedicated to recruitment and retention of patients and controls, and have developed an exciting plan to get newly diagnosed patients involved and enrolled. They have consulted with patients at every step of the process, and I am participating in all of the conference calls of the Recruitment and Retention Work Group.

First they funded research in new ways, now Fox is bringing their innovative minds to clinical trials recruitment in general - they see the need to accelerate the process and push the development of new treatments and discoveries and see the challenges in recruitment as a block in the pipeline.

They fully understand the difficulty of the task of recruiting de novo patients - I think they are up to the job, and it will be fun to see how it works out!

[pegleg]

Carey

I appreciate how dedicated the Fox Foundation is on this study; I cannot think of a better group to be behind it. I wasn't implying that they weren't up to this task; I was just restating the fact that most established neurologists (or those of the old school of neurology) write their Rx for Sinemet (carbidopa/levodopa) on the first visit. If they are a little more up-to-date in their field, they will start newly diagnosed patients on an agonist (mirapex or requip), or some may start patients on Azilect (MAO-I).

So when I say "good luck," I mean it! They will be hard-pressed to find newly diagnosed unmedicated "virgins."

Peg

[paula_w]

Originally Posted by indigogo

This is the huge biomarker study we've been discussing here for months.

Originally Posted by indigogo

Peg said, "And do you know how difficult it will be to find newly dx who have never taken PD meds? Well, all I can say is goood luck!"

Peggy - the Fox Foundation is sponsoring and funding this entire effort - the first time they have ever done anything like this. Their commitment is huge, they have a professional staff dedicated to recruitment and retention of patients and controls, and have developed an exciting plan to get newly diagnosed patients involved and enrolled. They have consulted with patients at every step of the process, and I am participating in all of the conference calls of the Recruitment and Retention Work Group.

First they funded research in new ways, now Fox is bringing their innovative minds to clinical trials recruitment in general - they see the need to accelerate the process and push the development of new treatments and discoveries and see the challenges in recruitment as a block in the pipeline.

They fully understand the difficulty of the task of recruiting de novo patients - I think they are up to the job, and it will be fun to see how it works out!

\

carey, oh dear dyskinetic hope it's in the right order.
i am pretty certain you are excited for all of us that fox is doing some of the things we have wanted ;.i 'm hoping you can understand this and then let's use this forum to full advantage to help, another idea that is finally taking fruit.


iT's not innovative to have ideas about and use patients for clinical trial recruitment. they are recruiting for their own trials and that's ok .but to pass it all off as original thinking when we have been doing that for 10 years and pdf has a clinical research learning institute [that is innovative thinking] is, unintentionally and in the midst of the excitement, which i so "fully understand "reading as a bit insensitive.

You should be excited.We need your energy and i am very proud of MJFF for coming here and taking some crap that looking back now could be the anger we were feeling at what seemed liike mike's abandondment [he used to talk to us thru interviews and here and there = now he is mostly silent] and our frustration over what looked like mjff not wanting to mess with the grassroots.

Debi stuck it out and i am really happy she is a member here and carey you have the energy and the wherewithal to do a great job. now be our rep too, we started much of what mjff is [one could say finally] doing and we have understood it fully for years. Accelerting the process is in our logo and the need is behind everything we do. we don't own it but we certainly "fully understand it".we want to help and interact. not be in the audience.

we have fought for rights and suffered ridicule i'm sure many times, now let's bring this all together and eliminate the tensions that arise when someone is given the credit for work that is unintentionally insensitive and hurtful to people. i don't think credit is even necessary. we all just do it for us all \but the gold star for innovation and originality in patient involvement in clinical trials goes on Perry Cohen's and PDF's foreheads.

.ok i am trusting that you do not see anything in my statement other than perhaps ][over?]reacting to a bit insensitive choice of words in your post.. that's all i'm seeing and think we'll all do better with the air cleared. that is what i am trying to do because i read your post and am going with how it first struck me, thinking that others will react too.

Fox willl do an outstanding job , they have the advantage and i'm especially happy to hear that patients have been consulted in the design. its been our mantra.

i am disappointed that controls have to be 30 - that does eliminate my daughters.

with respect to what hopefully was an unintentional, excitement driven, clueless [lol = that's a joke ] post about patients being involved at last.

with lightheartedness and respect,
best. -

[indigogo]

I hesitate to post anything about my relationship with MJFF because I think it will be misunderstood, but here goes .......

I was fortunate to be asked to serve on the MJFF patient advisory council. This has given me the opportunity to see first hand the lengths to which MJFF is going to advance the research on our behalf. And it has also given me the opportunity to be the irritating voice that says, constantly, "you are not doing enough," or, "have you thought of this." On one hand I feel like I can finally rest because I KNOW that they are doing the best they can be doing, that they "get" it. On the other hand, I feel like I can never rest because I know that they could always be doing more - and I feel obligated to point those things out. For instance, I sent an email to Debi recently asking what was the foundation's position on "de-risking" clinical trials for patients. And, while the PDF CRLI is innovative, Fox is taking clinical trials recruitment the next step to become truly proactive, bringing the different business and marketing approaches they have used successfully in their research funding to the realm of recruitment and retention.

I think a lot of the things Fox is doing now is because of vocal and unrelenting patient advocacy, including everything Pipeline has done, and every other individual who has been outspoken and proactive for patients. But I don't think it is productive to worry about whose idea it was originally or who said it the loudest for the longest - the important thing is that many of the things we have wanted to see happening are finally happening. I'll let Fox take the credit for knowing a good idea when they see it - they've got the heft to make it happen - patients don't.

Fox doesn't take patient involvement lightly, nor is it window dressing. They turned to patients when they organically understood that the patient point of view was critical. They listen to what is said here, they have a robust patient council, they have other patients on various task forces. The channels of communication are open and flowing both ways.

And you can be very sure that I understand every day that I stand on the shoulders of those who came before me. I've got that place at the table - I'm not alone, you all are there with me. I'm trying my very best to represent my tribe, all of you.

[paula_w]

it's good to hear you talk about your involvement and we need to hear about the relevant things. I do understand your enthusiasm carey, it was just a few words really that kind of smarted.

its really not a big deal if we don't make it one. thanks for understanding i do appreciate all you do.

sincerely,

[lindylanka]

I am SOOOO glad that it was me that got it wrong. I have been watching this too, this is somethingof global importance, and I don't know why I hadn't noticed numbers before, and suddenly I got worried that it would not be enough people, and it would be discounted......

Indigo I loved your words:

And you can be very sure that I understand every day that I stand on the shoulders of those who came before me. I've got that place at the table - I'm not alone, you all are there with me. I'm trying my very best to represent my tribe, all of you.

For all of those who have worked so fabulously hard over the years not just to get us to this place, but also orgs and MJFF especially, thanks from all those who benefit from your leadership, you are so much appreciated, and you know who you are. It is a truism but needs saying, that the orgs need patients every bit as much as we need them.

I wish and pray that this study does some of the vital things that it is hoped for it.....

Lindy