This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Fri May 24, 2013 4:36 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 86 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next
Author Message
 Post subject:
PostPosted: Thu Feb 04, 2010 4:10 pm 
Offline
Family Member
User avatar

Joined: Sun Jul 12, 2009 3:00 pm
Posts: 84
Location: Regina, Saskatchewan
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?


Top
 Profile  
 
 Post subject:
PostPosted: Fri Feb 05, 2010 4:36 am 
Offline
Family Elder
User avatar

Joined: Thu Nov 01, 2007 4:00 pm
Posts: 161
Location: Prague
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."


Top
 Profile  
 
 Post subject:
PostPosted: Fri Feb 05, 2010 9:31 am 
Offline
Family Elder
User avatar

Joined: Sun Jan 24, 2010 4:00 pm
Posts: 249
Location: Pittsburgh, PA, USA
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.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Feb 05, 2010 10:56 am 
Offline
Family Elder
User avatar

Joined: Sun Nov 07, 2004 4:00 pm
Posts: 1228
Location: Colorado
mshusband -

CTEVD - Combined Transcranial and Extracranial Venous Doppler this is a test
CRET - Controlled Randomized Endovascular Therapy
this is angioplasty


Top
 Profile  
 
 Post subject:
PostPosted: Sat Feb 06, 2010 10:53 am 
Offline
Family Elder
User avatar

Joined: Fri Dec 04, 2009 4:00 pm
Posts: 225
Location: Yehud, Israel
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


Top
 Profile  
 
 Post subject: Buffalo study
PostPosted: Sat Feb 06, 2010 3:29 pm 
Offline
Family Member
User avatar

Joined: Fri Feb 05, 2010 4:00 pm
Posts: 52
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!


Top
 Profile  
 
 Post subject: Re: Buffalo study
PostPosted: Sun Feb 07, 2010 2:59 am 
Offline
Newbie
User avatar

Joined: Sat Jan 23, 2010 4:00 pm
Posts: 4
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


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 07, 2010 7:10 am 
Offline
Getting to Know You...
User avatar

Joined: Wed Dec 09, 2009 4:00 pm
Posts: 12
thanks HOPPYfor sharing your letter frome buffalo man im getting excited now thanks so much to every one :idea: :peace:


Top
 Profile  
 
 Post subject:
PostPosted: Wed Feb 10, 2010 5:39 am 
Offline
Volunteer Moderator

Joined: Sat Mar 11, 2006 4:00 pm
Posts: 7619
Quote:
AlmostClever
Family Member
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!)
_________________
Dx'd 2005 no label MS
Dx'd 2010 PPMS?
Rebif, then Copaxone & LDN

AlmostClever
Family Member
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.
_________________
Dx'd 2005 no label MS
Dx'd 2010 PPMS?
Rebif, then Copaxone & LDN


Top
 Profile  
 
PostPosted: Wed Feb 10, 2010 7:52 am 
Offline
Family Elder
User avatar

Joined: Sat Nov 28, 2009 4:00 pm
Posts: 267
Location: Victoria, BC Canada
RESULTS!

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

http://www.buffalo.edu/news/10937

_________________
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 />


Last edited by happy_canuck on Wed Feb 10, 2010 8:47 am, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Wed Feb 10, 2010 7:58 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 860
Location: India
this should be a new thread!!!


Top
 Profile  
 
 Post subject:
PostPosted: Wed Feb 10, 2010 8:04 am 
Offline
Family Member
User avatar

Joined: Sun May 04, 2008 3:00 pm
Posts: 59
Location: Sactown, CA
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.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Feb 10, 2010 8:06 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 222
Yes, I thought the numbers would be much higher in the patient group.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Feb 10, 2010 8:10 am 
Offline
Family Elder
User avatar

Joined: Sat Nov 28, 2009 4:00 pm
Posts: 267
Location: Victoria, BC Canada
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 />


Top
 Profile  
 
 Post subject:
PostPosted: Wed Feb 10, 2010 8:12 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 222
"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.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 86 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Buffalo study

[ Go to pageGo to page: 1, 2 ]

foreignlesion

20

3552

Tue Jan 26, 2010 9:41 am

ozarkcanoer View the latest post

This topic is locked, you cannot edit posts or make further replies. Only 55% for buffalo study?

[ Go to pageGo to page: 1 ... 5, 6, 7 ]

costumenastional

91

12097

Thu Feb 11, 2010 2:29 pm

jimmylegs View the latest post

There are no new unread posts for this topic. FYI - Buffalo ccsvi study

mickb

5

4328

Fri Nov 20, 2009 8:01 pm

SammyJo View the latest post

There are no new unread posts for this topic. Buffalo Study-April

thornyrose76

7

1724

Sat Feb 13, 2010 2:25 pm

msgigiski View the latest post

There are no new unread posts for this topic. Buffalo study second group

bigfoot14

0

925

Wed Feb 24, 2010 9:18 am

bigfoot14 View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: