Dutch Study on CCSVI

MarkW · Post by **MarkW** » Tue Apr 06, 2010 9:33 am

I am having a 'discussion' with my neuro over CCSVI reseach. She says she is awaiting results from the Dutch group. I am aware of a study at the Amsterdam VU Medical Centre, which I think was trying to assess CCSVI using different techniques.
Could anyone please update me on what is happening in Amsterdam ?
size of study ?, techniques ?, time of results ? , is the research critical ? are my initial questions
Many thanks.
MarkW

JohnAm · Post by **JohnAm** » Tue Apr 06, 2010 9:51 am

See if you can find any information on
http://www.vumc.nl/zorg/

scroll down to "zoeken" and write CCSVI should give you 6 hits

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Asher · Post by **Asher** » Tue Apr 06, 2010 10:42 am

20 MS patients, 20 healthy controls using MRI-Venography. They claim to be renound for their 'imaging skills'. Not much apart for that. Oh, test started early Feb and results are due 6 months later.

Inge67 · Post by **Inge67** » Tue Apr 06, 2010 10:59 am

Slight correction Asher. You were correct on the numbers, not on the dates.

Scanning started in January, finished beginning of March. They plan to announce results anytime soon; I expect end of April, beginning of May.

Aim of the study is to replicate the association CCSVI with MS and find the numbers Zamboni claimed. As we all know, Buffalo has already found that, so there will be no big news coming from Amsterdam.

They have scanned 20 relatively "new" MS patients (mobile, no big invalidity, mobile etc). They plan to expand the resarchgroup in a follow up study, which will last another year. Then they will probably look at patients with a higher EDSS score.

Please note: last scentences are only based on rumour: they are very silent about their study. Nothing revealed yet, which is a shame, as everyone in medical Holland is holding their breath and waiting for the results. So nothing happens here. I am very sorry to hear that the same thing is happening in the UK.

About your question on techniques and the research being critical I can say the following:
MRI/MRV techniques are used, but using which protocol is unknown. There has been contact with dr. Mark Haacke, so there is hope.

Is the research critical? If they aim to establish association MS and CCSVI, it is not critical I think. It wil be a small copy of the Buffalo findings hopefully. If not, I am very curious what their explanation would be...
It is critical in the sense that it is blocking/stalling all other actvities/research/opinion/treatment on ccsvi.

Lyon · Post by **Lyon** » Tue Apr 06, 2010 11:17 am

Inge67 · Post by **Inge67** » Tue Apr 06, 2010 11:35 am

Hi Lyon,

I am not sure what you are actually saying here, so my response might be slightly of track...

They only used MRI techniques, non invasive. The gold standard venograpy is not used, probably due to the fact that it is not deemed ethical to operate on healthy controls...

What they try to find is the same number as Zamboni did: 95% pwMS have stenosis , 0% of the healthy controls. Obviously, they will not find that, as Buffalo results have learned. Rumour has it that they did also find CCSVI in healthy controls. That was to be expected. The only thing is that the % of CCSVI in healthy controls have to be significantly lower than pwMS. If that is the outcome, we're laughing.

Lyon · Post by **Lyon** » Tue Apr 06, 2010 11:41 am

Inge67 · Post by **Inge67** » Tue Apr 06, 2010 11:59 am

Okay Bob: rescind!

I am absolutely positive they used only MRI techniques. What I heard is that they scanned the whole group, then had some sort of editing of the photo's so all MS signs such as Leasions in the brain were edited out. This in order to give every photo equal opportunity to be diagnosed properly and unbiased.

Then radiologist and neurologists (I presume, not sure of) will score each photo on ccsvi existence or not. Then the ccsvi photo's are labelled again: PwMS or healthy control? And then in the end you add things up.

If there are more ccsvi cases in the pwMS tray and less in the HC tray, you have your outcome.

There were slight rumours about using dopplers, but that was never realy verified. Was difficult to do that in a blind test I presume.

But once again: they keep method, aim and timetable very much to themselves. Everything I tell here is hearsay, nothing officially confirmed.
Except for the venogram: we had people on the Dutch forum who had the MRI, no venography in sight.

ozarkcanoer · Post by **ozarkcanoer** » Tue Apr 06, 2010 12:16 pm

That's good news about the Dutch group. Whatever they are doing, if they find a correlation between MS and CCSVI than that's another INDEPENDENT group that will give more validity to the hypothesis !! And also they are doing a short fairly quick study with results out before the NMSS even hands out thier CCSVI grants !! So all we have to do is HOPE that the Dutch group does corroborate CCSVI and MS. What a downer if they don't.

ozarkcanoer

Lyon · Post by **Lyon** » Tue Apr 06, 2010 12:38 pm

Inge67 · Post by **Inge67** » Tue Apr 06, 2010 1:04 pm

ozarkcanoer wrote: Whatever they are doing, if they find a correlation between MS and CCSVI than that's another INDEPENDENT group that will give more validity to the hypothesis !!

So all we have to do is HOPE that the Dutch group does corroborate CCSVI and MS. What a downer if they don't.

ozarkcanoer

in fact you are right ozark. That is the reason why they are doing it the way they are doing it. The only thing that worries me a bit is that I hear more and more that mrv is not the appropriate method to diagnose ccsvi. A doppler is better. So I hope they caught everything.

But rumour has it that the outcome is positive.

And Bob...babblefish?!?!

Lyon · Post by **Lyon** » Tue Apr 06, 2010 1:27 pm

Inge67 · Post by **Inge67** » Tue Apr 06, 2010 1:40 pm

Ok thanks. It just sounded so funny.
By the way: i think there is also an english language button on the site. But when i used it, the text with the pressrelaese disappeared. Strange.

Rereading the pressrelease i now understand the miscommunication about the venography: they mentioned MRI venogram. Meaning MRV. That is not the same as a catheter venography. But i must admit i had to read it twice myself ( in dutch even!).

Asher · Post by **Asher** » Tue Apr 06, 2010 2:02 pm

VU med center site: MRI-onderzoek (MR-venografie) which literaly means: MRI-test (MR-venography).

fogdweller · Post by **fogdweller** » Tue Apr 06, 2010 2:53 pm

Inge67 wrote: They only used MRI techniques, non invasive. The gold standard venograpy is not used, probably due to the fact that it is not deemed ethical to operate on healthy controls...

Ae you sure? Is a veinogram considered surgery? Don't they do angiograms on healthy patients? (same procedure, just arteries instead of veins). I guess there might be some risk, however slight, in injecting the dye, but wouldn't the risk be small enough to be justified as long as there is good informed consent?

This is not a challenge, it is a question, I don't know the answer. Would someone who really knows (e.g. someone who designs and conducts medical trials) let me know.