[Conductor71]

I am sure that many of you will run across this information today. Apparently, researchers have determined a more scientific means of measuring disease severity. Certain aspects of our speech closely correlate to assessment on the UPDRS, and it seems pretty accurate. From the abstract on Interface

We apply a wide range of known speech signal processing algorithms to a large database (approx. 6000 recordings from 42 PD patients, recruited to a six-month, multi-centre trial) and propose a number of novel, nonlinear signal processing algorithms which reveal pathological characteristics in PD more accurately than existing approaches.

Interested to see the results....

Laura

[AnnT2]

Thanks Laura for this information.

It is interesting but still just another measurement device to see how quickly/slowly we are deteriorating. In other pathologies, such as cancer or heart disease, such measurements have a purpose in that they prompt more or less aggressive treatment. With PWP, our treatments are usually added to or decreased as a result of our subjective response to questions from the neurologists. This study maps our progress into the depths of PD, and, while scholarly and thorough, does nothing to help us with our disease. It might be have been more productive to put the money necessary for this study into finding treatments that work.

Ann

[tulip girl]

Ann, while you are right that it does not help us with our disease directly , the new measurement scale might be usefull in measuring the benefits of a treatment with more accuracy, and eliminate the placebo effect. IMHO

TG

[Conductor71]

Originally Posted by tulip girl

Ann, while you are right that it does not help us with our disease directly , the new measurement scale might be usefull in measuring the benefits of a treatment with more accuracy, and eliminate the placebo effect. IMHO

TG

Ann,

I so appreciate what you are saying but honestly I don't think it is lack of funding that holds back novel treatments or better treatments. It is t he FDA and a system that does not reward innovation. I would argue that even something as crude as the Duodopa pump system, while not as seductive as a viral vector treatment, is an advance that is light years beyond what we have now. It has been used successfully in other countries for over ten years, yet still the FDA subjects it to a ridiculous standard of some sort. Whatever happened to fastracking or the notion that while the powers that be sit back to watch Solvay jump through rather ridiculous hoops for approval here. Meanwhile, people here continue to suffer.

I think that finding more scientific ways to diagnose, establish baseline disease staging or severity, and a way to monitor progression in a very non-invasive way is key to seeing that novel new treatments make it our way. Imagine how frustrating it must be to develop a new drug then realize that there is no real way to know the efficacy of that drug on slowing disease progression when you have nothing more than a subjective paper and pencil rating scale to go on; think of how inspiring that must sound to potential investors. If we cannot even be sure that all trial participants even have PD in the first place, how can we ever get reliable, valid results in research? I am pretty certain that the lack of scientific measure hurts us in ways we don't even yet know.

And TG, yes, the Placebo Effect! I hadn't thought of that but this is another problem we face in the development of new treatments. The Placebo effect so prevalent in PD also must have an impact on funding trials for newer treatments, and I don't think it is a positive one.

Laura

[moondaughter]

I think that finding more scientific ways to diagnose, establish baseline disease staging or severity, and a way to monitor progression in a very non-invasive way is key to seeing that novel new treatments make it our way.

And TG, yes, the Placebo Effect! I hadn't thought of that but this is another problem we face in the development of new treatments. The Placebo effect so prevalent in PD also must have an impact on funding trials for newer treatments, and I don't think it is a positive one.

Laura[/QUOTE]

HOORAY for the placebo effect and knowing thatt the PD condition responds to it gives us a compass. maybe the newer trials should include it rather than dismiss lest thhey skew their own science

interesting post Laura on voice analysis

md

[tulip girl]

HOORAY for the placebo effect and knowing thatt the PD condition responds to it gives us a compass. maybe the newer trials should include it rather than dismiss lest thhey skew their own science

interesting post Laura on voice analysis

md[/QUOTE]

In my opinion and not humble, the placebo effect is a cruel joke and becomes less effective the more you expose yourself to it. Yes it works especially for those desperate to find relief....but for how long and at what expense. Sham surgeries in research trials should be banned. Monitor the trials for an extra year, natural outcomes will surface with more accuracy.

TG

[Conductor71]

Originally Posted by tulip girl

In my opinion and not humble, the placebo effect is a cruel joke and becomes less effective the more you expose yourself to it. Yes it works especially for those desperate to find relief....but for how long and at what expense. Sham surgeries in research trials should be banned. Monitor the trials for an extra year, natural outcomes will surface with more accuracy.

TG

TG,

Right on! Placebo research design is spurious to say the least. It is the easy way to prove the so-called efficacy of a treatment. By testing a drug against a sugar pill, they are really setting the bar high, aren't they? What wouldn't have an effect measured against that; not to mention that it is ethically suspect. The true test is an active control design. This involves measuring a potential new drug against existing treatments. Imagine TEVA and Azilect taking on Selegiline, for example. It doesn't happen because the risk is too big that there isn't a whole lot going on with the new MAO-inhibitor. Better to come up with an iffy delayed start trial design and measure against de novo patients with all in the earliest stages of disease process. That way they improve their chance of a much more positive spin. The real test is to look at patients who took either selegeline vs. rasagaline for a five year period, who comes out ahead of the game then? Truth is pharmas select a design model based on what yields the best result for their bottom line, and the FDA does what again?

Do you know the work of Marcia Angell? She is a former editor of NE Journal of Medicine and a critic of the FDA and the whole clinical research "system" especially the role of pharma.

Sham surgery is beyond reprehensible. Talk to Paula about that one. It is banned in Europe, yet embraced here as the "gold-standard"- pish!

Here is a great article on the ethics of sham surgery. Placebos that harm It just so happens to focus on Parkinson's shams....

[tulip girl]

As long as there are desperate folks who are willing to take the RISK for a "chance of getting the real deal", who are talked into participation to help others, who don't know enough about the risks they are taking (which are downplayed), there will be testing with placebo and sham surgeries. WE ARE NOT DISPOSABLE and if we all refused to agree to such study design, maybe we would be empowered to have a voice. Certainly there would be double the study participants and drive the cost of research down.

I don't know the work of Marcia Angell - but will look it up, nor have I read the article on sham surgery. Thank you. I did get the NEJOM weekly.

My viewpoints on placebo and sham surgery comes, not from opinions of others but from questioning, forming my own opinions and being unafraid to speak up. (I am not only cheeky but very opinionated - LOL) I say this as encouragement to all those of you who visit, read and disappear without so much as writing a word. Don't be intimidated. I'd like to hear of your experinces with research studies. Maybe you can make a difference.

TG

[moondaughter]

Originally Posted by tulip girl

As long as there are desperate folks who are willing to take the RISK for a "chance of getting the real deal", who are talked into participation to help others, who don't know enough about the risks they are taking (which are downplayed), there will be testing with placebo and sham surgeries. WE ARE NOT DISPOSABLE and if we all refused to agree to such study design, maybe we would be empowered to have a voice. Certainly there would be double the study participants and drive the cost of research down.

I don't know the work of Marcia Angell - but will look it up, nor have I read the article on sham surgery. Thank you. I did get the NEJOM weekly.

My viewpoints on placebo and sham surgery comes, not from opinions of others but from questioning, forming my own opinions and being unafraid to speak up. (I am not only cheeky but very opinionated - LOL) I say this as encouragement to all those of you who visit, read and disappear without so much as writing a word. Don't be intimidated. I'd like to hear of your experinces with research studies. Maybe you can make a difference.

TG

I take a lot of comfort in the knowing that what I have faith in and sometimes merely by observation, I cocreate an outcome. I recall cold fusion experiments done at Texas A & M that were influenced by the expectations of the experimentors. what kind of world would we live in if we could not influence it with our free will? we are not purely physical chemical beings - we have souls intimately connected to each other and our planet. I shudder to think that my healing would depend solely on some pill or surgery (not that they aren't helpful) . I envision my healing from the pd condition one of a vast spiritual dimension where I have learned to focus and align with deep kindness and tranquility-pills and surgery can help but somewhere along the way my free will is beingg summoned-thank God!

what I was suggesting was research could be done on placebo itself - altho this has already been done on the science of prayer such as thhe work of Lynne Mctaggert... http://www.lynnemctaggart.com/

kind regards,
md

[moondaughter]

Originally Posted by moondaughter

I take a lot of comfort in the knowing that what I have faith in and sometimes merely by observation, I cocreate an outcome. I recall cold fusion experiments done at Texas A & M that were influenced by the expectations of the experimentors. what kind of world would we live in if we could not influence it with our free will? we are not purely physical chemical beings - we have souls intimately connected to each other and our planet. I shudder to think that my healing would depend solely on some pill or surgery (not that they aren't helpful) . I envision my healing from the pd condition one of a vast spiritual dimension where I have learned to focus and align with deep kindness and tranquility-pills and surgery can help but somewhere along the way my free will is beingg summoned-thank God!

what I was suggesting was research could be done on placebo itself - altho this has already been done on the science of prayer such as thhe work of Lynne Mctaggert... http://www.lynnemctaggart.com/

...this is not to suggest that one can wish creation (or healing) into existence such as the "the Secret" craze sugggests (ironic isn;t it that at a time when that movie became popular our economy is circling the drain). Not at all. Only that faith and shining light on the shadows one casts can and must play a role towards our evolution.

kind regards,
md

...this is not to suggest that one can wish creation (or healing) into existence such as the "the Secret" craze sugggests (ironic isn;t it that at a time when that movie became popular our economy is circling the drain). Not at all. Only that faith and shining light on the shadows one casts can and must play a role towards our evolution.