Clinical trials at the moment?

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

Clinical trials at the moment?

Postby Ernst » Fri Jul 09, 2010 12:15 am

I know that University of Buffalo is doing clinical trial now, but are there more places doing the same? Stanford? Europe?

Clinical trials are needed to get this move faster and to get more scientific results.
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Postby costumenastional » Fri Jul 09, 2010 1:09 am

http://www.clinicaltrials.gov/ct2/show/ ... svi&rank=1

just adding the official page. next one should be Zamboni's.
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Postby joge » Fri Jul 09, 2010 8:56 am

Europe, Belgium, Aalst, Beelen MD, OLVZ Hospital

Dr. Roel Beelen
Department of cardiovascular and thoracic surgery
OLV Hospital
Moorselbaan 164
9300 Aalst
België
Tel: (0032)(0)53/724599
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Postby Ernst » Fri Jul 09, 2010 9:17 am

Is there more info of that Belgium trial? I red something some time ago and it was quite interesting.
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Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Belgium trial

Postby joge » Fri Jul 09, 2010 10:19 am

Hi Ernst,

Roel Beelen MD, wrote a letter last month to the Amsterdam VU-medical centre researchteam, because he has some questions about their research. In this letter he mentions some of his first results. A full report will follow later on.

I tried to translate his letter; here it is; it will give you some information about the research he is doing.

---translation (amateur, but close to the original--------


To: VUmedical centre, Amsterdam


Dear,

Through a journalist my attention was just drawn to a report in a Dutch current affairs program on CCSVI.

In this report, there are quite a few disturbing elements.

1. They conclude from a very limited group of 20 people that there is no causal link. I wonder, what's the objective "statistical power" of a series of 20 patients.
2. The evaluation of the 20 patients, was it all done by the same team? Were the results independently verified.

Although our series is a long follow-up, I would like to show some results of our series of patients:

107 patients with confirmed MS were screened for CCSVI, in 97 patients CCSVI non-invasive (CT, Duplex) diagnosed (independently diagnosed by vascular surgeon and radiologist).

81 patients

* 64-balloon dilatation
* 2 Valvulotome
* 8 cutting balloon
* 7 stenting

No complications

29 patients are monitored, using Doppler and using an internationally validated questionnaire (MSQOL-54 instrument) and after treatment as reported by every individual of these 29 patients, the quality of life has improved. Statistically, this is even more significant.

When the last patient in this group has reported, (one year follow up) results will be openly published.

Despite these figures both by us and in other centers, how can you, with a much smaller number of patients, go on saying that there is no link between MS and CCSVI? Would't it be logical to consider this theory, because of the spectacular results? Currently I still believe that CCSVI may not be the primary cause of MS, but in certain forms of MS it surely plays a very important role in the development of MS. I therefore call for a comprehensive inter-disciplinary dialogue so that the MS patients by a combination of classical pharmacological treatment and interventional treatment, can get the optimal treatment of the moment.

Yours sincerely,

Roel Beelen, M.D.
Aalst
Belgium
I'm ready, I'm ready !
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Postby Ernst » Sat Jul 10, 2010 2:29 am

Wow! This is fantastic. Thank you very much for your exellent transalation and now we wait the publishing of this. Great!
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby costumenastional » Sun Jul 11, 2010 11:11 pm

Joge, thank you friend!
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Postby Ruthless67 » Mon Jul 12, 2010 10:20 pm

Thank you so very much, joge, for the translation of Dr. Roel Beelen's letter.

It is very positive to hear another doctor speak up and report on what he is seeing now, not waiting until he is published. But pushing for even more research into MS/CCSVI even as he is finishing up on his first study.

Like Dr. Zamboni implored, "Research, research, resarch!"

The avalance is picking up speed. Information is NOT a diversion, INFORMATION is POWER!

Lora
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