Dr. Haacke needs normal volunteers-

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

Dr. Haacke needs normal volunteers-

Postby cheerleader » Mon Nov 22, 2010 4:08 pm

Hey-
to all "normals" in the Wayne State area, Dr. Haacke needs you:

http://www.mrc.wayne.edu/volunteer.htm
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Dr. Haacke needs normal volunteers-

Postby scorpion » Mon Nov 22, 2010 5:19 pm

cheerleader wrote:Hey-
to all "normals" in the Wayne State area, Dr. Haacke needs you:

http://www.mrc.wayne.edu/volunteer.htm


Do you know if the study is blinded?
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Re: Dr. Haacke needs normal volunteers-

Postby L » Mon Nov 22, 2010 5:21 pm

scorpion wrote:
cheerleader wrote:Hey-
to all "normals" in the Wayne State area, Dr. Haacke needs you:

http://www.mrc.wayne.edu/volunteer.htm


Do you know if the study is blinded?


You volunteering?
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Postby formyruca » Mon Nov 22, 2010 6:03 pm

My wife responded to an earlier posting on FB in regards to Dr. Haacke needing controls. My wife replied in September and heard nothing in return.

Is it for real this time?
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Postby scorpion » Mon Nov 22, 2010 7:06 pm

I was hoping the study would be blinded so that he could identify those with MS and without which would go a long way in validating CCSVI actually exists.
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Postby cheerleader » Mon Nov 22, 2010 7:13 pm

formyruca wrote:My wife responded to an earlier posting on FB in regards to Dr. Haacke needing controls. My wife replied in September and heard nothing in return.

Is it for real this time?


Yes--this is for real. Click on the link for info. Participants will be compensated. It is not blinded. Dr. Haacke is trying to quantify what "normal" blood flow should look like, and he needs healthy normal controls. He tested himself first. If he finds CCSVI in normals, he will write about that. He is a scientist.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Mon Nov 22, 2010 7:26 pm

cheerleader wrote:
formyruca wrote:My wife responded to an earlier posting on FB in regards to Dr. Haacke needing controls. My wife replied in September and heard nothing in return.

Is it for real this time?


Yes--this is for real. Click on the link for info. Participants will be compensated. It is not blinded. Dr. Haacke is trying to quantify what "normal" blood flow should look like, and he needs healthy normal controls. He tested himself first. If he finds CCSVI in normals, he will write about that. He is a scientist.
cheer


Ok. I just do not undertsand why these guys do not perform a blinded study where they identify people with MS and without MS based on "blood flow".
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Re: Dr. Haacke needs normal volunteers-

Postby scorpion » Mon Nov 22, 2010 7:28 pm

L wrote:
scorpion wrote:
cheerleader wrote:Hey-
to all "normals" in the Wayne State area, Dr. Haacke needs you:

http://www.mrc.wayne.edu/volunteer.htm


Do you know if the study is blinded?


You volunteering?

A blinded study I sure would. This one. Nope.
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Postby cheerleader » Mon Nov 22, 2010 8:05 pm

Let me see if I can explain this....this is not about efficacy of a drug or treatment, scorp. That is the realm of blinded trials with MRI. This is a test which has specific parameters. It is a diagnostic, not a trial.

Dr. Haacke has tested and has MRI/MRV info for about 500 pwMS/pwCCSVI. What he needs to see are normal brains. In MRI diagnostic studies, healthy controls are age and sex matched, but not blinded. Really....try to find a "blinded" MRI study with normals for diagnostics. They don't exist.

Dr. Haacke began this adventure back in Bologna '09 at the CCSVI conference. He was fascinated to see Dr. Zamboni's research as an explanation for the iron deposition in MS he had noted in SWI MRI (which he had invented.) It made sense to him, and he created:
http://www.ms-mri.com/

At that point, he was putting together an MRV protocol to help doctors see flow, iron deposition and reflux in CCSVI. Now he wants to have something to compare this to. He needs to run the entire Haacke protocol (SWI, flow, perfusion etc.) on normal people to have a baseline.

I would hope that healthy controls who live near Wayne State might volunteer. I don't think you'd qualify as a healthy normal anyway, scorp. I do, and may go in if Dr. Hubbard decides to do this in San Diego.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby formyruca » Mon Feb 21, 2011 7:43 pm

Sadly, my wife is only the 11th normal scanned so far.
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Postby cheerleader » Mon Feb 21, 2011 8:13 pm

formyruca wrote:Sadly, my wife is only the 11th normal scanned so far.


Dr. Haacke needs funding....let's hope the NIH accepts his new request.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby formyruca » Mon Feb 21, 2011 8:43 pm

I think finding normal volunteers of the female persuasion is the bigger hurdle at this point. It would help with age age/gender matching, according to Y.

I would think with all the members and concerned folks here, we could do a lot better than 11.

I was scanned by the team last week and it was great to meet Y and Z. I still have a flow problem, which I was glad to hear (would like more improvements). My GP should get the full report soon.

It's a shame Dr. Haacke is having funding issues.
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Postby whyRwehere » Tue Feb 22, 2011 7:01 am

If I were nearby I would do it for free....anything to help pursue the search for an MS treatment, without the toxic side-effects.
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Postby Hooch » Tue Feb 22, 2011 2:53 pm

My husband, a "normal", is being scanned next week in Hamilton, Canada - Haacke protocol. I believe that this testing will wrap up at the end of March.
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Postby Cece » Fri Mar 18, 2011 1:41 pm

The major problem to date demonstrating the importance of the vascular biomarkers is a
lack of normal volunteers in the hundreds to complement the data from MS patients
which is now in the thousands.
Once sufficient statistics are made available a much
clearer picture will emerge regarding which of these biomarkers or more likely which
combination of these biomarkers is the most important to characterize the disease.

http://ccsvism.xoom.it/ISNVD/Abstract-Haacke.pdf

Dr. Haacke has data on at least 1000 MS patients! Amazing. If he is still looking for normal volunteers, perhaps we need someone who lives in that area who could raise local awareness to get him some volunteers?
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