[paula_w]

Sep 15 2010 (Vol. 30, No. 16)
Parkinson Disease Research in Doldrums

• Patricia F. Dimond, Ph.D.

Discontinuation of PD Trial Highlights Hazards Inherent in Developing Drugs for This Indication


A recent GlobalData report stated that Parkinson disease (PD) drug development in general, focused as it is on the dopamine pathway, is “increasingly hampered by a lack of innovation.” Compounds in late-stage development aim at the symptomatic treatment of the disease, as do current medications. Any company developing treatments for PD will need to overcome prevailing product weaknesses including psychiatric side effects and obsessive compulsive behaviors as well as limited efficacy, the report pointed out.


http://www.genengnews.com/gen-articl...doldrums/3417/

[violet green]

[QUOTE=paula_w;712349]Sep 15 2010 (Vol. 30, No. 16)
Parkinson Disease Research in Doldrums

• Patricia F. Dimond, Ph.D.

Discontinuation of PD Trial Highlights Hazards Inherent in Developing Drugs for This Indication


Paula,

thanks for finding confirmation of our gut feeling about this issue. When you see it in print it's even more depressing. So we must look in new directions.

katherine

[swept]

Establish an Independent PWP Voice
Independent PWP should be a patient advocate group independent of established charities and aware of the value of medical research to both public health
and to the global economy. Experienced patient advocates taking the voice of PWP to clinicians the public pharmaceuticals and the medical research community strategically led on behalf of PWP patients.

Effective Patient Input
“Decisions about me not without me”

Doldrums and Depression weve no time for such luxury ladies.

Networks such as this forum are a valuable tool for all PWP and perhaps they should be given credible status as a resource worthy of recognition and inclusion by clinicians and researchers and managers of health systems

Improving Health Care PWP for ourselves.our future
The future must be with electronic and patient held records. Electronic records must involve some form of international co-ordination in the development processes or the tragic waste of shared information continues, security and access to data should protect but not obstruct.

The possibilitys are incredible but the obstacles are endless

Better data quality and collecting, potential to speed up research initiatives development and outcomes.
Earlier assessment and treatment for problems with medications, better access and co-ordination of care between clinicians.On and on.

Accredited researchers should be required to share results of any research surely its about progress saving lives not protectionism.Any chance?

How do we do it?

[paula_w]

have they read about this?

By Cristina Luiggi
Same poop, different gut

For physicians and researchers alike, fecal transplants present an opportunity to gain insight into disease

[Published 3rd November 2010 02:47 PM GMT]

Most people might find the idea of having another person's feces injected into their intestine hard to stomach, but for those with intractable gastrointestinal problems, another person's bodily waste is all that's standing between a lifetime of severe illness and a full recovery.

This therapy — known as fecal transplants, bacteriotherapy, or human probiotic infusions — has taken to the limelight in recent

Read more: Same poop, different gut - The Scientist - Magazine of the Life Sciences http://www.the-scientist.com/news/di...#ixzz14PiuRU1D

http://www.pdonlineresearch.org/disc...transplants-pd

What's the poop on fecal transplants for PD?


By Brian K. Fiske, PhD, Associate Director, Team Leader, Research Programs, Michael J. Fox Foundation for Parkinson's Research (MJFF)
Some recent news around fecal transplants for treating severe C. difficile/colitis mentions a trial in people with PD showing some potential benefit as well. Does anyone know more about this approach and how/why it might have PD potential? Is there a higher prevalence of C. difficile in people with PD or could such an approach as fecal transplants help to normalize gut function and improve ldopa pharmacokinetics to reduce fluctuations and dyskinesias, etc.?

swept this isn't directed at your post...i will respond to it but was working on this one when you posted.

[tulip girl]

http://www.pharmatimes.com/Article/1...impresses.aspx


At least something in the pipeline.

TG

[paula_w]

Originally Posted by swept

Establish an Independent PWP Voice
Independent PWP should be a patient advocate group independent of established charities and aware of the value of medical research to both public health
and to the global economy. Experienced patient advocates taking the voice of PWP to clinicians the public pharmaceuticals and the medical research community strategically led on behalf of PWP patients.

Effective Patient Input
“Decisions about me not without me”

Doldrums and Depression weve no time for such luxury ladies.

Networks such as this forum are a valuable tool for all PWP and perhaps they should be given credible status as a resource worthy of recognition and inclusion by clinicians and researchers and managers of health systems

Improving Health Care PWP for ourselves.our future
The future must be with electronic and patient held records. Electronic records must involve some form of international co-ordination in the development processes or the tragic waste of shared information continues, security and access to data should protect but not obstruct.

The possibilitys are incredible but the obstacles are endless

Better data quality and collecting, potential to speed up research initiatives development and outcomes.
Earlier assessment and treatment for problems with medications, better access and co-ordination of care between clinicians.On and on.

Accredited researchers should be required to share results of any research surely its about progress saving lives not protectionism.Any chance?

How do we do it?

Most of the suggestions in your list are set up already. We have a champion for electronic records and we have an independent org ready. I think the first step is to set up a method of communication and suggest Skype because it's free and we wrote a book using it.

Our first priority is to finish our book, but i see no reasons why we couldn't set up communication; the more there are of us, the more projects will be going simultaneously.

Then we can determine what the most pressing needs are and go about speaking, researching, interviewing and informing people . We are going to use our PCC site to expand on topics in depth, interview people, blogs, news, data collection, and just continue in a creative format similar to our book. Once we start talking, ideas will be abundant. IMHO

Thanks for your input!! keep it coming!

[indigogo]

I know they have their own perspective, but Katie Hood responded to the doldrums article saying, "It's not true!"

Also, one item on the agenda for the MJFF Patient Advisory Council meeting next week is "expanding patient contributions to research solutions"

We continue to gain influence. I'll keep you posted on the meeting.

[Conductor71]

Originally Posted by indigogo

I know they have their own perspective, but Katie Hood responded to the doldrums article saying, "It's not true!"

Also, one item on the agenda for the MJFF Patient Advisory Council meeting next week is "expanding patient contributions to research solutions"

We continue to gain influence. I'll keep you posted on the meeting.

Carey, thanks for sharing Katie's perspective. While I don't have her level of expertise or connections to research, I am inclined to agree with her based on what I have researched.

There are many novel treatments being explored looking at other neurotransmitters and a vaccine in development! The bigger issue is why do so many of these potential treatments languish or stall out in the pipeline. It seems to me there are myriad options on the horizon, they just never seem to see the light of day.

Maybe the focus should be on why these non-dopaminergic alternatives never seem to get anywhere. Is it because investors see anything beyond the "gold standard" as too risky? We are impacted by people who have a lot of money but don't fully understand the disease enough to know what to wisely invest in. Neurologix, is short of funding for phase III trial monies for its GAD treatment. This speaks volumes, I think. The innovation is there, the risk taking of venture capital is not, so it would seem.

Just my take on it, I could be wrong....

Laura

Laura

[paula_w]

Each one of us could be reading this from a different perspective. The media has a mind slant with its own slippery slope. We are used to being ignored. BUt now it's beyond going back. We want to say how we are defined. Why should someone who doesn't have it, define it?

[Conductor71]

Originally Posted by paula_w

Each one of us could be reading this from a different perspective. The media has a mind slant with its own slippery slope. We are used to being ignored. BUt now it's beyond going back. We want to say how we are defined. Why should someone who doesn't have it, define it?

Oh no, Paula. I am in complete agreement with you on the patient perspective that is missing. I just think in looking beyond dopamine, there is progress. No matter the type of treatment, there is a huge, gaping void in the involvement of patient perspectives. Heck, but then again I think that if they would have started a huge database of all of us giving complete medical histories, our life stories, all our demographics and then some, they would have been able to run checks for patterns and narrowed down environmental culprits, at the very least by now. That is something crude, basic, and simple that may have yielded important clues.

Laura