Parkinson's Disease Tulip


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Old 01-26-2013, 09:31 AM #11
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i can see an immediate benefit if it can only help detect pd at stages where the first physical signs are enough to make 1 see a doctor. i imagine millions are wasted in tests for pinched nerves and other problems on diagnosing which to the trained eye is pd.
seems every yopd'er i have talked to had a few or more tests/doctor visits before seeing a neuro.
i imagine in a few years diagnostic tests for a lot of diseases will be a smart phone app.
there already are some.
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Old 01-26-2013, 10:32 AM #12
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so this math guy sets up a web site to record 10,000 voices, big deal, there's been research in using voice to diagnose and measure pd remotely for years. billions have likely been spent on voice recognition software by securitty/law enforcement/cia. seems like just an attention getter to me. this is going to take a tremendous amount of $$$$ and research before it might become useful for diagnosis and drug companies/researchers would use it.
and there are companies much farther along in this area. TED imho can be more hype than substance,
http://www.imedicalapps.com/2011/07/...sons-patients/

i imagine if you add video motion analysis, face recognition, voice recognition, movement measuring, cognitive testing, vital signs, all which could be cheaply captured on a smart phone, that would be far more useful and will likely be what going to materialize rather than just voice. there are likely hundreds of diagnostic/measurement apps on iphones either tied to your healthcare provider directly or for example you can take a picture of a mole, etc and send it to a company to be diagnosed.

http://www.idt.mdh.se/kurser/ct3340/...bmission_1.pdf

sorry if i seem a little negative, but this guy is getting way too much attn. imho.
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Old 01-26-2013, 09:47 PM #13
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soccertese,

Smell the coffee!

Little gets the attention he does because he has a game changing technology, the support of Andy Grove, one of Intel's founders, and is a natural communicator. You're right about other people having similar technology: it's an idea whose time has come. But it is Little who in just a few months got over 10,000 people to submit a voice sample.

Little's approach enables rapid, free diagnoses. But it offers other advantages as well. I suspect that used in addition to the normal doctor-led diagnostic process it will reduce the number of misdiagnoses. It enables symptom measurement which, in turn, offers the possibility of mass trials, reporting quickly.

If I were to select those initiatives in the last 5 years which were most likely to translate into an improvement in the lives of medium term PwPs, I would choose (in no order):
Little, Parkinson's voice initiative;
Brin, 23andMe, mass genetic testing;
Alberts, forced exercise;
Jannetta, peduncle compression.

John
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Old 01-26-2013, 11:57 PM #14
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i smell the coffee all the time, i'm in seattle.
he got 10,000 anonymous calls, no way to verify the honesty of the caller, iseems like a publicity stunt. he still has to do some real studies with real patients over time to see how well his algorithms can measure pd.. other researchers are taking a more comprehensive approach.

i understand the value of early diagnosis or better diagnosis or easily accessible diagnosis. but until he actually publishes something for peer review that has gives an error rate rather than just blow his own horn i'm not going to take him seriously.

if he thinks he can detect a higher risk of developing pd before there are visual symptoms, unless he can correlate that with a person's genome or other biomarkers, he has to wait until pd can be proven. either way, he has to do careful research over time. and if there are too many false positives/negatives it's worse than useless.
where does tt say andy grove is supporting him? i think the article stated intel was developing it's own pd detection methods using voice/etc and shared some recordings with little.

ji wouldn't attempt to give an opinion on the "top5" but i'm not sure even 23ANDME would be included. imho, the jury is out on forced exercise until the results from larger clinical trials come out.
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Old 01-27-2013, 10:06 AM #15
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Default He deserves his 15 minutes

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Originally Posted by soccertese View Post
I smell the coffee all the time, i'm in seattle.
he got 10,000 anonymous calls, no way to verify the honesty of the caller, seems like a publicity stunt. he still has to do some real studies with real patients over time to see how well his algorithms can measure pd. other researchers are taking a more comprehensive approach.
Where has the comprehensive approach approach gotten us? In over 40 years of research, Sinemet despite its downfalls is still our only really proven treatment. We still have no common measuring point to develop blood or cerebro spinal fluid tests. When Andy Grove got involved in funding PD research, he made the key observation that never before had he seen people work so hard and achieve so little.

Andy Grove's Last Stand.


What Little is envisioning is revolutionary. He, along with Brin and Grove, are taking the medical research industry to the next level. They recognize we have a model that excels in generating a lot of info and data but scarcely makes anything of it. When does anyone and step back and say why no real progress? Andy Grove is doing just that at UCSF; they designed the virus vector after studying the Amgen records within five years of their aborted trials. That is being used in the Ceregene trials and will be used in the NIH GDNF trials. These guys, along with MJFF, are the only reason we seem to be making any progress.

I think Little's research is huge; if it pans out, we have one element that links us all, so we finally have that much desired point of measure to use in both diagnosis and tracking progression. Soccertese, you are right. Much literature already exists on vocal and speech changes in PD. From what i gather, Little is using that info and data, then using mathematical algorithms to make it useful. He essentially using what is already proven in many other studies and synthesizing it. How do you put that through phase trials? It either works, or it doesn't.

I do think the app development stuff a bit premature, but I don't think Little is being hyped.

Last edited by Conductor71; 01-27-2013 at 10:15 AM. Reason: typos
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Old 01-27-2013, 10:08 AM #16
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Soccertese,

You write that Little "seems like just an attention getter to me" and that his collection of 10,000 calls "seems like a publicity stunt". What evidence do you have for these assertions?

It seems to me that he's a good guy doing a good job with good technology.

John
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Old 01-27-2013, 11:38 AM #17
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Quote:
Originally Posted by Conductor71 View Post
Where has the comprehensive approach approach gotten us? In over 40 years of research, Sinemet despite its downfalls is still our only really proven treatment. We still have no common measuring point to develop blood or cerebro spinal fluid tests. When Andy Grove got involved in funding PD research, he made the key observation that never before had he seen people work so hard and achieve so little.

Andy Grove's Last Stand.


What Little is envisioning is revolutionary. He, along with Brin and Grove, are taking the medical research industry to the next level. They recognize we have a model that excels in generating a lot of info and data but scarcely makes anything of it. When does anyone and step back and say why no real progress? Andy Grove is doing just that at UCSF; they designed the virus vector after studying the Amgen records within five years of their aborted trials. That is being used in the Ceregene trials and will be used in the NIH GDNF trials. These guys, along with MJFF, are the only reason we seem to be making any progress.

I think Little's research is huge; if it pans out, we have one element that links us all, so we finally have that much desired point of measure to use in both diagnosis and tracking progression. Soccertese, you are right. Much literature already exists on vocal and speech changes in PD. From what i gather, Little is using that info and data, then using mathematical algorithms to make it useful. He essentially using what is already proven in many other studies and synthesizing it. How do you put that through phase trials? It either works, or it doesn't.

I do think the app development stuff a bit premature, but I don't think Little is being hyped.
LAURA,
i gave an opinion on LITTLE, nothing in his background makes me think he can pull this off, and imho TED = hype, it's more about presenting IDEAS, not actual results. If you want the maximum attention you present at TED
and some of his TED presentation made no sense, for example:
"Current symptom tests are done in a clinic. They are expensive, time-consuming, and logistically difficult. So mostly, these tests are not done outside clinical trials".

THESE TESTS ARE EXPENSIVE AND TIME CONSUMING? WHAT TESTS? granted, many pd'ers get tested to rule out other problems, often given an MRI but even if this voice test detected PD you still have to see a doctor to verify it.

" In collaboration with one of my students, I worked for several years and now have algorithms that, in the lab, reach around 99 percent accuracy in detecting the disease. We also know how to predict the severity of symptoms to within a few percentage points of clinical judgment."
I'D LIKE TO SEE THE RESEARCH ON THIS. THIS WAS LIKELY DONE IN A CONTROLLED LAB SETTING.
http://www.maxlittle.net/publication...hort_07-11.pdf


I am not attacking the concept. I also realize just how difficult it will be to pull this off, imagine if the software has a bug in it and pd'ers are told they don't have pd and vice versa, so this is going to require A LOT OF TESTING. if you were a healthy individual and were told this test had a 90% chance you might develop pd, would you even take it? And even though the FDA doesn't regulate software apps as medical devices yet, they will and that's not an easy approval.
imagine the can of worms that will open up if you called in, took the test, were told you may have pd or a high probability of developing PD and your're 25. that shouldn't stop anyone from trying to do this but i kind of see this voice test as better done in the doctor's office for initial diagnosis and then done by the patient to track their progression. i don't know about you but when my pd diagnosis was traumatic.

think about tracking progression. i can sound perfectly normal during the day and have the typical pd voice when my med's wear off. so even that isn't a simple proposition.


http://www.maxlittle.net/publication...00887-2011.pdf
This paper had 43 patients and didn't provide a table of each patient's results.
so unless they have done a tremendous amount of work since then, i'd say they are in the VERY EARLY STAGES of development and god help us if every pd researcher hyped their work as much.

Sorry if i'm being overly argumentative and/or critical. I certainly don't want to turn this into a debate about pd research, and again, just criticizing the self-promotion of this guy, he ain't working on a cure.
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Old 01-27-2013, 01:33 PM #18
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Default AAV vector

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Andy Grove is doing just that at UCSF; they designed the virus vector after studying the Amgen records within five years of their aborted trials. That is being used in the Ceregene trials and will be used in the NIH GDNF trials.
e
Laura
I am interested in this information you posted . If you have a reference or source where you got this info, could you please post it? As I am looking into gene therapy-based therapeutics, it seems like AAV vector is the most often used one and has been shown to be safe in several studies. Though NIH's gdnf trial says it is with AAV, it was not clear if it is the same/similar to the one used in ceregne trials. I was just about to send letters to NIH and PCORI about this matter. My specific questions are:

Is NIH using the same AAV vector as the one used in Ceregene trials?
If so, all the relevant protocols, assays for testing antibodies etc., are rather should have been approved by the FDA. Ceregenes studies already established this vectors safety.

If so: Why is NIH taking so long to start GDNF clinical trials? I wanted to see if I can get a straight forward response from the NIH.

If not, is there anything PCORI (since it is the patient centered arm of Human Health Services ) can do about this issue.

Your comment caught my attention and it is just what I was looking for. Thanks

Girija

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Old 01-28-2013, 10:52 PM #19
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Default Voice initiative started with data from Intel

[QUOTE=soccertese;951341]i

where does tt say andy grove is supporting him? i think the article stated intel was developing it's own pd detection methods using voice/etc and shared some recordings with little.
/QUOTE]

Try googling their names together. Max Little did not have PD on his radar until he ran across a colleague researching voice in PD for an Intel at home PD program of some sort that never saw the light of day. Intel had 50 recorded voices and all kinds of data, and their guy thought of Max's algorithms...a team for the voice initiative was formed from this post meeting Grove.

http://www.medgadget.com/2012/08/int...nitiative.html

These original recordings were part of a 6 month research project. Some of these tests are performed routinely by speech pathologists. Have you ever been assessed by one? They can tell you more about your condition than your neuro from your voice including severity and if only one or both sides of your brain are affected. Little is synthesizing a lot of what is already known.
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Old 01-28-2013, 11:31 PM #20
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John, this is very interesting.

In my own studies I discovered that the pulses from your brain stem and spinal chord that control every part of your body are rich with information about who you are. These pulses show up in the tremor in your hands, in your voice, in the pulses in the iris of your eye, in your breathing, heart rhythms, facial expressions, handwriting, etc. So, theoretically it is possible to capture and mathematically evaluate every movement you make for a host of diseases and physical problems.

I've already found data that indicates that your ancestry can be tracked by those signals as if you are looking at genetic DNA.

It sounds amazing, I know, but I sincerely feel that we are on the cusp of breakthroughs in mathematics and science that are going to transform the way we look at the world. Chaos Theory has already had some significant impacts and it's a brand new science.

It's an exciting time to be alive. At 62 years old I might be too old to benefit from many of the breakthroughs that are yet to come in PD but generations younger than I have much to be hopeful about. (Well, I guess that DBS sounds exciting and it's available now.)

Isn't it a pity that the social, religious and political sectors always have such a hard time keeping up with science? (i.e. stem cell research).

Thank you for your posts.

Steve
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