Crowdsourcing Project Predicts Progression of ALS 29
sciencehabit writes Using data from old clinical trials, two groups of researchers have found a better way to predict how amyotrophic lateral sclerosis (ALS) progresses in different patients. The winning algorithms—designed by non-ALS experts—outperformed the judgments of a group of ALS clinicians given the same data. The advances could make it easier to test whether new drugs can slow the fatal neurodegenerative disease. For the competition, participants were given just a slice of this data set, collected over 3 months, and asked to design an algorithm to predict how patients would fare in the subsequent 9 months, according to a standard functional scale that measures their ability to move and care for themselves. When predictions from the two winning algorithms were combined, they outperformed estimates solicited from a dozen ALS clinicians who pored over the same data, the authors report. They estimate that using these algorithms to predict outcomes could allow a drug sponsor to reduce the size of the trial by at least 20% and save as much as $6 million in a large phase III trial.
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I would say very much so, considering he's been dead for 73 years.
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I would say very much so, considering he's been dead for 73 years.
Or is it???
Damn I've netflix'ed too many zombie movies lately.
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oh, snap. Ya got me.
Or is it?
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They should rename it Stephen Hawkings disease
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Actually, the ALS Association is trying to just get it commonly called ALS, so as to emphasize that anyone can get it.
To be honest, I prefer the name Lou Gehrig's. Everyone knows about it that way.
Re: Too late for Lou Gehrig (Score:2)
Everyone in the US, but in the rest of the world almost no one knows who Lou Gehrig was.
It's better to call deceases by their medical names and not based on some person's name.
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The ALS association obviously wants people to use ALS because its good branding for them.
In the UK and Commonwealth Countries it's known as Motor Neuron Disease.
The savings amount to using previous trial data as a control, which would never be accepted by the FDA in drug trials because it won't control for any features specific to the actual drug trial.
This also shows that large amounts of modern medicine, including high tech specialties like neuroscience, have not been subjected to basic statistical analys
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Please can we have using TLAs without explaining them made a criminal offence.
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I don't know if the summary was edited but this is in the summary: "a better way to predict how amyotrophic lateral sclerosis (ALS) progresses in different patients"
Cost savings - so what? (Score:3)
Seems to me that drug makers will charge whatever maximizes their sales revenue, regardless of their development costs.
Lowering their development costs for them might affect whether or not they bring it to market. But if they do, they'll charge as much as they can get away with.
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they're looking at stem cell therapy as a potential cure for ALS. What's that worth to someone suffering from it?
Hell, if I ever find myself looking down the ALS muzzle, I'd be the first to volunteer as a pincushion. I go fucking nuts if I'm bedridden with the latest fashionable illness, I would go batshit if I suddenly found myself permanently unable to fucking swallow.
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My point was simply that reducing the development cost for an ALS drug may be irrelevant from the perspective of those who want the finished product. Unless it's the difference between the drug coming to market or not.
Of course, I'm just guessing at that, but I was trying to start a discussion.
Re:Cost savings - so what? (Score:5, Insightful)
My late wife was in a clinical trial for ALS. Unfortunately, it didn't work and there was no Phase3 III. We also found out after the fact she was in the placebo group.
But you're absolutely right intoit, if you're ever unlucky enough to lose the ALS lottery (or have your SO do so), you will grasp at every fucking straw that comes your way. If that includes becoming a pin cushion or a guinea pig, you do it.
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I'm sorry about your wife.
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an associate of mine was diagnosed with ALS in 1998 following a single incident of unexplained loss of motor control (which just so happened while he was meeting with a physician). He was permanently confined to a wheelchair within three weeks and a pine box 4 months later. It was terrifying how quickly it took him considering his lifestyle (cycled *everywhere*, his car actually expired in his garage through underuse). ALS is not fussy about how fit you are or how stressful your job is or pretty much any ot
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Especially for a "market" as small as ALS patients.
As recently as two years ago, there was exactly ONE drug approved for ALS treatment: Rilutek (riluzole). And all it did was extend life about 6 months on the average.
The cost? over $1000 per month. At the time, it hadn't gone generic.
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"Doofus" is an apt description for someone who says "So what?" to reducing the cost of drug testing.
drug makers will charge whatever maximizes their sales revenue, regardless of their development costs.
And insurance companies (including Medicare/Medicaid) know this, and thus negotiate much lower prices for drugs in their Formularies. Thus, insurance companies can negotiate even lower costs.
Or... the drug companies run same-size tests and get more accurate predictions on outcomes.
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the way they negotiate lower prices is to guarantee exclusivity in the supply chain. A treatment available on Medicaid from GSK won't be available through the same route from Pfizer, because Pfizer will be frozen out of the chain by virtue of a GSK-included clause in the Medicaid contract.
To borrow a car analogy, it's like buying a 2014 Rolls Royce Phantom (V12 Merlin, come on! Tease me some more!) and being told that your warranty will be null and void if you swap out the engine block for a 410 Ford V8.
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the way they negotiate lower prices is to guarantee exclusivity in the supply chain. A treatment available on Medicaid from GSK won't be available through the same route from Pfizer, because Pfizer will be frozen out of the chain by virtue of a GSK-included clause in the Medicaid contract.
It sounds like you're referring to drug patents and the lack of certain drugs in the generics market. Am I misunderstanding you?
If not, then you need to do a better job explaining, since if that's not drug patents then what you wrote makes zero sense.
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no I'm referring to lack of certain generics from certain suppliers through certain routes, and the theory that it's down to contractual clauses rather than scarcity of raw materials or the technology for synthesis. Patents have fuck all to do with it.
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I guess I don't know whether fuck all means "everything" or "nothing".
Complete Misunderstanding of Epidemiology (Score:3)
They can't validate a scale using unintervened progression or existing treatments, then pretend it says ANYTHING about a new/unknown treatment. The whole point of a new treatment is to alter the progression of the disease in a new/different way; the whole point of clinical trials is to determine the NEW course of the disease using the NEW treatment.
The claim made here is: a better tool to predict the time progression of headaches treated with aspirin (or beer or sex) can better predict the time progression of a headache treated with some yet-uninvented drug, so we needn't test the new treatment as thoroughly to characterize it. That's like saying "the more predictable sex with your partner is, the more you know about sex with a different partner"
And yes, I AM a physician and molecular biologist.
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Waiting at my doctors office wouldn't bother me near as much if I thought he was posting to Slashdot:)
PRO-ACT (Score:2)