False Creek announces Canadian CCSVI treatment study

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False Creek announces Canadian CCSVI treatment study

Postby happy_canuck » Wed Sep 08, 2010 10:18 am

From their webpage: "We would like to provide everyone with an update of where we stand on CCSVI and the ability to provide treatment. Venoplasty is an option we would like to provide our patients. However, before making this step we are required to participate in a research study. At the moment we are trying to receive approval for a study of blood flow between MS and non MS subjects."
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http://www.facebook.com/falsecreekcare

~Sandra admin for CCSVI at BC MS clinics: http://tinyurl.com/BC-MS-clinics
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 PCakes » Wed Sep 08, 2010 10:22 am

w00t!! :) go go FCSC!!

thanks Sandra!!..always good to see you over here in TiMS :)
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Re: False Creek announces Canadian CCSVI treatment study

Postby fogdweller » Wed Sep 08, 2010 10:25 am

happy_canuck wrote:From their webpage: "We would like to provide everyone with an update of where we stand on CCSVI and the ability to provide treatment. Venoplasty is an option we would like to provide our patients. However, before making this step we are required to participate in a research study. At the moment we are trying to receive approval for a study of blood flow between MS and non MS subjects."
See:
http://www.facebook.com/falsecreekcare

~Sandra admin for CCSVI at BC MS clinics: http://tinyurl.com/BC-MS-clinics


Y our title is misleading. Please re-title it False Creek announces plans to seek study approval. I mistakenly thought they had a study beginning. Not intended to be insulting, just lots of us are very interested in what studies are going on.
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Postby happy_canuck » Wed Sep 08, 2010 11:34 am

Sorry if it was misleading -- I know they are expecting the nod very soon. We announced other clinics who were in the process of getting things pulled together here, so I just wanted to make sure everyone was aware.

I like that their research will do treatment and no sham procedures. It all helps build the bigger picture of CCSVI and gets a number of people treated in the process.
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 thornyrose76 » Wed Sep 08, 2010 12:11 pm

When they do get approval, and then proceed, how long will this actual study take before they can then perform the venoplasty to MS sufferers?
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Postby happy_canuck » Wed Sep 08, 2010 1:47 pm

thornyrose76 wrote:When they do get approval, and then proceed, how long will this actual study take before they can then perform the venoplasty to MS sufferers?


Ask the Canadian government...

But, seriously, I'm delighted that we will be getting people treated in Canada, even it's only as part of a study. If that's what we have to do to get this across the country, so be it and the sooner it gets started, the better. In the meantime, the lucky participants will get their treeatment right away.

Sandra
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 msrelly » Wed Sep 08, 2010 1:51 pm

In reading the Facebook announcement by FCSS, it doesn't say anything about a treatment study.

To me it looks pretty clear that they are trying to get IRB approval to do a "blood flow" study which I would guess is imaging/diagnostic only. Once the study has been completed, then they can go to the next step which would be either a treatment study, or possibly permission from the College of Physicians to provide venoplasty.
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Postby happy_canuck » Wed Sep 08, 2010 2:11 pm

msrelly,

Note their announcemet says "venoplasty" -- this is treatment! When I spoke with them a while ago, this was their goal with putting in for research approval. They are already doing imaging.

Sandra
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 eric593 » Wed Sep 08, 2010 2:54 pm

They made a comment before that they intended to seek trial participants from those who had already gone to them for scanning previously.

I find this an exceptionally unfair way to derive a pool of participants, to turn to their paying customers.

I hope they come up with a fairer and more balanced way. I would imagine that it would be discriminatory to take participants from only those who could afford to pay for scans there in the past. It would deprive those who could not afford to be scanned by them.

Their news release is pretty vague. What was the point of it when there are no details really and nothing concrete to announce?
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Postby msrelly » Wed Sep 08, 2010 3:49 pm

Hi Sandra,

I still read it as venoplasty happening AFTER the required study into bloodflow.

Venoplasty is an option we would like to provide our patients. However, before making this step we are required to participate in a research study. At the moment we are trying to receive approval for a study of blood flow between MS and non


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Postby falsecreekcare » Fri Sep 10, 2010 5:59 pm

eric593 wrote:They made a comment before that they intended to seek trial participants from those who had already gone to them for scanning previously.

I find this an exceptionally unfair way to derive a pool of participants, to turn to their paying customers.

I hope they come up with a fairer and more balanced way. I would imagine that it would be discriminatory to take participants from only those who could afford to pay for scans there in the past. It would deprive those who could not afford to be scanned by them.

Their news release is pretty vague. What was the point of it when there are no details really and nothing concrete to announce?


Hello Eric, the participants will be chosen on a first come first serve basis. This study is a pre-requisite for treatment studies, I assure you that we are working daily to have CCSVI treatment available in Canada.

Apologies if it seems we released a pointless update. However, we receive calls daily for any update. This way the best way to let everyone know that yes we are still working towards our goals.
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Postby eric593 » Fri Sep 10, 2010 6:28 pm

falsecreekcare wrote:This study is a pre-requisite for treatment studies, I assure you that we are working daily to have CCSVI treatment available in Canada.



Thank you for your post. So if you eventually undertake treatment trials, you will not be filling the group of participants with or give priority to only those who paid themselves to be scanned by you in the past?

Why is this study required prior to treatment trials? Required by whom? Why is another prevalence study needed before undertaking a trial to determine whether, of those MSer's who have blockages, angioplasty improves their symptoms? Who is requiring it? Thanks.
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Postby Johnson » Fri Sep 10, 2010 6:47 pm

...

Why is this study required prior to treatment trials? Required by whom? Why is another prevalence study needed before undertaking a trial to determine whether, of those MSer's who have blockages, angioplasty improves their symptoms? Who is requiring it? Thanks.

My impression is that they were not doing a study, so much as doing the screening for a price. Supply/demand.
My name is not really Johnson. MSed up since 1993
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Postby eric593 » Sat Sep 11, 2010 1:39 am

Johnson wrote:My impression is that they were not doing a study, so much as doing the screening for a price. Supply/demand.


I was asking about the study they are presently proposing, that they say is a pre-requisite for treatment studies. I was curious who was requiring it to be undertaken prior to any treatment study.
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Postby falsecreekcare » Mon Sep 13, 2010 2:03 pm

eric593 wrote:Thank you for your post. So if you eventually undertake treatment trials, you will not be filling the group of participants with or give priority to only those who paid themselves to be scanned by you in the past?

Why is this study required prior to treatment trials? Required by whom? Why is another prevalence study needed before undertaking a trial to determine whether, of those MSer's who have blockages, angioplasty improves their symptoms? Who is requiring it? Thanks.


Hi Eric, we are working within the guidelines of the National IRB in order to run through the approval process and prevent the study from being blocked.

For both the blood flow and treatment trials it will be first come first serve. However, each patient will also have to qualify based on the requirements of the studies.
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