Dr. Haskal at ISNVD 2014

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Dr. Haskal at ISNVD 2014

Postby Cece » Sat Feb 22, 2014 7:45 pm

from a slide picture that Joan put up on the CCSVI in MS facebook page
Clinical application led to early signal led to widespread dissemination in uncontrolled fashions led to medical tourism led to financial conflicts of interest led to polarizing (bidirectional) rhetoric led to mutual exaggerations led to extraordinary citizen and patient involvement

T1 and T2 steps were sidestepped

Anyone familiar with "T1 and T2 steps"? I am guessing that means research.
This is from Dr. Ziv Haskal.
What exactly does "early signal" mean in this context?
I definitely participated in dissemination (check), medical tourism (check), some rhetoric (check), and extraordinary involvement (check). :)
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Re: Dr. Haskal at ISNVD 2014

Postby CuriousRobot » Tue Feb 25, 2014 4:58 pm

"T1 and T2": type 1 and type 2 error.

Type 1 error is a false positive, or believing that a pattern is real when it is not (the rustle in the tall grass is a large, predacious animal, whereas in reality, just the wind; a low cost mistake to make).

Type 2 error is a false negative, or not believing a pattern to be real when it is (the rustle in the tall grass is the wind, while, in fact, it is a large, predacious animal; a high cost mistake).

When life isn't endangered, however, this activity can lead to apophenia: /æpɵˈfiːniə/, which is "the experience of seeing meaningful patterns or connections in random or meaningless data."

More reading: http://www.scientificamerican.com/article/patternicity-finding-meaningful-patterns/

Thanks for the updates from ISNVD 2014, Cece.
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Re: Dr. Haskal at ISNVD 2014

Postby CuriousRobot » Tue Feb 25, 2014 5:12 pm

"The early signal"

The shot heard round the world:


Ralph Waldo Emerson wrote:By the rude bridge that arched the flood,
Their flag to April’s breeze unfurled,
Here once the embattled farmers stood,
And fired the shot heard round the world.

The foe long since in silence slept;
Alike the conqueror silent sleeps;
And Time the ruined bridge has swept
Down the dark stream which seaward creeps.

On this green bank, by this soft stream,
We set to-day a votive stone;
That memory may their deed redeem,
When, like our sires, our sons are gone.

Spirit, that made those heroes dare,
To die, and leave their children free,
Bid Time and Nature gently spare
The shaft we raise to them and thee.
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Re: Dr. Haskal at ISNVD 2014

Postby cheerleader » Tue Feb 25, 2014 11:27 pm

It's translational research, Cece. Not error. Stages of scientific investigation.
http://www.ctsi.ucla.edu/education/file ... 013.pdf%20

T1 → T2 → T3 → T4
T1 or translation phase 1 jump-starts the translation of bench research to the patient bedside, albeit in a limited fashion. Here is where case study research and Phase 1 and 2 clinical trials usually occur. Will a new treatment X that was discovered in a hospital research lab work in, say, ten patients at that hospital?

T2 expands that sphere of discovery to the larger patient populations seen in Phase 3 and 4 clinical trials, observational studies, and perhaps some survey research. Again, using the same new treatment X example, will it now work in two hundred patients from different types of populations at different hospitals or clinic sites? How about thousands?

Once positive results are obtained from T2, then T3 can be launched into action. The practice-oriented stage of translational science, T3 relies on dissemination and implementation research to find out the answers to such questions as: Is treatment X now actually being used in the world-at-large, and if not, why not? The identification of new clinical questions, barriers, and gaps in care related to treatment X is focused on at this stage.

What happens if the results from T3 (or for that matter from any of the preceding stages) aren’t positive or aren’t as good as hoped for? The power of translational research is that it is an iterative process, allowing room for the returning to a prior translational stage to respond to treatment strategy barriers.

Finally, if T1 –T3 have reached their goals and responded effectively to any issues, new policy research is engendered in T4. What is the best method to reach clinicians and patients alike with a nationwide policy concerning treatment X so that they, first, will understand the new treatment and second, start to use it?

http://www.tuftsctsi.org/about-us/what- ... 1103215140

Dr. Haskal was commenting on the fact that we went straight to treating venous malformations and calling it "CCSVI" in the patient population.
He does not begrudge the patients who were treated any of their benefits...he was commenting on the fact that we need a "do-over" for CCSVI science and its relationship to neurodegenerative disease. But he also said he treats stenotic jugular veins and other veins every day, for a variety of diseases. And as Dr. Dake has published, he sees similar improvements in fatigue, cognitive fog and other symptomology in those he treats for vena cava syndrome, jugular stenosis and other central venous issues. The IRs treat venous disease...they want to start over in understanding how it impacts the brain. Back to T1, FDA approved registries (like the Hubbard Foundation) and clinical trials for that.

So, yeah, I was there. No gun shots, not a lot of hyperbole, either. And Jeff was there with me for all the lectures, enjoying the science and the benefit of his healed gray matter.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Re: Dr. Haskal at ISNVD 2014

Postby Cece » Sat Mar 01, 2014 8:25 pm

Ok that makes more sense now. Thanks to all.
A lot of the research has focused on CCSVI in MS instead of on CCSVI in its own right. I could see starting from the beginning with a clear focus on CCSVI but I dislike how slow it goes. Turtle-slow research when we have already jackrabbited to the end.
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Re: Dr. Haskal at ISNVD 2014

Postby 1eye » Sun Mar 02, 2014 6:45 pm

Inasmuch as the do-over may bring along with it improvements which may improve the success rate and perhaps the longevity of treatment, do-overs are always welcome. the last few years while people have been treated outside native countries they have done so in many cases because doctors in their own countries have been actively prevented from doing he procedure. The part that has slipped through the cracks has been the process of experts teaching non-experts in this very new procedure.

During the last years, my brother has has some recurrence of his hydrocephalus, and in that, his shunt has always worked. i believe this operation is an example of a new procedure which was completely accepted by medicine. There were no gigadollars 'at stake' There was no war in the press. There were no refusals to provide follow-up care. He has had a shunt since 1964. it relieves pressure in is ventricles by shunting it into his jugular. He has never had a stent, nor a patency problem.
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