Buffalo Study

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

Postby foreignlesion » Thu Feb 04, 2010 4:10 pm

They are calling for volunteers for CCSVI treatment (phase II trials), but it doesn't mention anything about eligibility. Is it only open to people who were part of phase I?
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Postby RuSmolikova » Fri Feb 05, 2010 4:36 am

cah wrote:Buffalo Neuroimaging Analysis Center (BNAC) awarded the 2010 Fellowships to Dr. Ondrej Dolezal from Czech Republic for duration of six months.
But I can't make head or tails of it. Apparently they fund a CCSVI-Study in Czech Republic?


ErikaSlovakia wrote:...a doctor from Czech Republic went to the USA to train Doppler and I think in April or May this year couple of MS patients in Czech Republic are supposed to go for Doppler as well. It is organised by an MS center in Prague. I do not know more and I do not think there are any official information about this.
Erika


Official information from Buffalo:
"We have a doctor from Prague who is currently studying with us the doppler technique. He will train with us for 6 months before returning home. The goal is to start a study in your area sometime next summer.
We are accepting applications for participation. Please note this is a research diagnostic study - there are no treatment interventions in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins."
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Postby mshusband » Fri Feb 05, 2010 9:31 am

So ... when do we expect the results of the Buffalo study ... seriously.

Not our speculative guesses ... when does it seem reasonable they're going to come out (although I guess that is a guess).

Also, can someone quickly explain to me the difference between their study identifiers?

CTEVD/CCSVI -

CRET/CCSVI -

I don't know what the first part of those means (or how it's relevant).

Thanks.
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Postby Sharon » Fri Feb 05, 2010 10:56 am

mshusband -

CTEVD - Combined Transcranial and Extracranial Venous Doppler this is a test
CRET - Controlled Randomized Endovascular Therapy
this is angioplasty
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Postby Squeakycat » Sat Feb 06, 2010 10:53 am

mshusband wrote:So ... when do we expect the results of the Buffalo study ... seriously.


"We are planning a press release by mid-February, as well as submission of these findings to the American Academy of Neurology annual conference as late breaking news."
Dr. Robert Zivadinov, MD, PhD
Director, Buffalo Neuroimaging Analysis Center

The American Academy of Neurology 2010 Annual Meeting takes place in Toronto, Ontario, April 10–17
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Buffalo study

Postby gauchito » Sat Feb 06, 2010 3:29 pm

Hello everyone! I am writing from Argentina and new in the site. I received yesterday an email from Buffalo for I had applied for first
test that finally did not occur. It is a letter from Dr. Zivadinov. Let me share some interesting paragraph:

"I write to you today as researchers from the Buffalo Neuoroimaging Analysis Center (BNAC) and the Jacobs NeurologicalInstitute (JNI) at the
University at Buffalo are completing their analysis of the first
of several studies on chronic cerebrospinal venous insufficiency(CCSVI) in multiple sclerosis (MS). In a few weeks, we will announce the findings of CCSVI prevalence in the first 500 subjects, who participated in the study, Combined Transcranialand Extracranial Venous Doppler (CTEVD) evaluationin MS and related diseases.We believe our CCSVI studies
testing Dr. Paolo Zamboni’s controversial CCSVI theory will
result in groundbreaking discoveries in the field of MS."

Although not official yet, very promising words. I also learned that they will test a second group, they implemented a diagnostic center for MS sufferers, and will also test a different therapeutic approach other than Zamboni´s and Dake´s

hold you breath!
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Re: Buffalo study

Postby Hoppy » Sun Feb 07, 2010 2:59 am

gauchito wrote:Hello everyone! I am writing from Argentina and new in the site. I received yesterday an email from Buffalo for I had applied for first
test that finally did not occur. It is a letter from Dr. Zivadinov. Let me share some interesting paragraph:

"I write to you today as researchers from the Buffalo Neuoroimaging Analysis Center (BNAC) and the Jacobs NeurologicalInstitute (JNI) at the
University at Buffalo are completing their analysis of the first
of several studies on chronic cerebrospinal venous insufficiency(CCSVI) in multiple sclerosis (MS). In a few weeks, we will announce the findings of CCSVI prevalence in the first 500 subjects, who participated in the study, Combined Transcranialand Extracranial Venous Doppler (CTEVD) evaluationin MS and related diseases.We believe our CCSVI studies
testing Dr. Paolo Zamboni’s controversial CCSVI theory will
result in groundbreaking discoveries in the field of MS."

Although not official yet, very promising words. I also learned that they will test a second group, they implemented a diagnostic center for MS sufferers, and will also test a different therapeutic approach other than Zamboni´s and Dake´s

hold you breath!

I'm holding my breath but my lungs are fit to burst! I do hope things move quickly.
Linda
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Postby jess » Sun Feb 07, 2010 7:10 am

thanks HOPPYfor sharing your letter frome buffalo man im getting excited now thanks so much to every one :idea: :peace:
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Postby jimmylegs » Wed Feb 10, 2010 5:39 am

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Posted: Wed Feb 10, 2010 12:00 am

So it looks like Phase I went well enough to go to launch!

BNAC is taking 30 patients for the Liberation Procedure!

http://www.bnac.net/?page_id=534

(Sorry if someone already posted this!)
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Posted: Wed Feb 10, 2010 12:14 am

BNAC:

We are excited to announce a new pilot research study conducted by the Departments of Neurology and Neurosurgery to evaluate the safety and effectiveness of intravascular angioplasty for the treatment of venous narrowing in the treatment of Multiple Sclerosis (MS).

Thirty (30) MS patients will go through a two phase study which will include selective Venography followed by a balloon angioplasty procedure. Study testing will include Doppler ultrasound, MRI with MRV, physical and neurological examinations, CT Angiogram (CTA) of the head and neck and CT Perfusion (CTP) of the head. All of these tests will be performed at baseline (prior to any treatment) and at 1 month after treatment. A subset of these tests will also be performed 3 and 6 months post treatment.

While we are only accepting 30 people, we are hopeful this treatment plan will be so successful that we will be able to offer it to many others. You can provide your contact information for immediate entry into our database by completing a form at: http://vovici.com/wsb.dll/s/8727g42d66

We know how exciting this plan is to everyone but we kindly ask people to complete only one contact information form per patient. We anticipate a large response and want to be sure that we can respond to everyone. For updates, please continue to visit us at www.bnac.net. We plan to provide as many updates as possible through our website. Thank you for joining us on this journey.
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BUFFALO STUDY PRELIM RESULTS

Postby happy_canuck » Wed Feb 10, 2010 7:52 am

RESULTS!

55%-62% of MSers have stenosis compared to 29.5% of controls:

http://www.buffalo.edu/news/10937
Last edited by happy_canuck on Wed Feb 10, 2010 8:47 am, edited 1 time in total.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby sbr487 » Wed Feb 10, 2010 7:58 am

this should be a new thread!!!
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Postby 10yearsandstillkicken » Wed Feb 10, 2010 8:04 am

much less than 100% and 29% of controls had it as well. I would like to know if those 29% had any issues like cronic fatigue or restless legs etc.
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Postby TFau » Wed Feb 10, 2010 8:06 am

Yes, I thought the numbers would be much higher in the patient group.
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Postby happy_canuck » Wed Feb 10, 2010 8:10 am

10yearsandstillkicken wrote:much less than 100% and 29% of controls had it as well. I would like to know if those 29% had any issues like cronic fatigue or restless legs etc.


My thoughts exactly. Were they told they may be at risk for MS in the future? What is the definition of healthy?

I am not disappointed in the % in the slightest. There was always going to be some juggling based on sample size and exact protocols. These are Doppler results too, so Buffalo continues to scan and add MRV now.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby TFau » Wed Feb 10, 2010 8:12 am

"I am not disappointed in the % in the slightest. There was always going to be some juggling based on sample size and exact protocols. These are Doppler results too, so Buffalo continues to scan and add MRV now."


Oh good, maybe it will be a bit higher. I would be very happy with 75% and above.
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