MSS study grants

[sbr487]

In case someone has not seen, this the detailed list of research study:
http://mssociety.ca/ccsvi/pdf/Research% ... sheets.pdf

Interesting one is:

Title: Chronic Cerebrospinal Venous Insufficiency in relation to Multiple Sclerosis
Carlos Torres, MD
The Ottawa Hospital
Ottawa, Ontario
Timing: 7/1/10-6/30/12
Amount: C$102,866 over 2 years

Team doing this study is:

Additional Personnel (all are affiliated with The Ottawa Hospital, the Ottawa
Hospital Research Institute and the University of Ottawa):
 Dr. Ian G. Cameron, Department of Diagnostic Imaging (MRI Unit)
 Dr. Matthew J. Hogan, Division of Neurology
 Dr. Mark E. Schweitzer, Department of Radiological Sciences and Department of
Diagnostic Imaging
 Dr. Cheemun Lum, Department of Diagnostic Imaging
 Dr. Miguel E. Bussière, Division of Neurology
 Dr. Santanu Chakraborty, Department of Diagnostic Imaging
 Dr. Mark S. Freedman, Division of Neurology (MS Research Unit)

Its tough to believe that this study will not suffer the well known bias of Freedman

[Lyon]

.

[PCakes]

Title: Investigation into Venous Insufficiency in Multiple Sclerosis
Anthony Traboulsee, MD
Medical Director, MS Clinic at UBC Hospital, Vancouver Coastal Health and University of BC
Vancouver, BC
Katherine Knox, MD
Saskatoon MS Clinic, University of Saskatchewan
Saskatoon, Saskatchewan
Timing: 7/1/10/-6/30/12
Amount: C$200,000 over two years
 The team is studying the prevalence of CCSVI in 200 people including those with MS
and controls without MS, using catheter venography, ultrasound, and magnetic
resonance venography.
 Unique to this study is the inclusion of family members, such as identical twins of MS
patients who have not developed MS, in control groups.
 The team hopes to verify the usefulness of non-invasive techniques that would make it
easier to screen for CCSVI, which would be needed if results from this and other
research confirm that future therapeutic trials are warranted.
 The research aims to determine the reliability and accuracy of different imaging
techniques for screening for CCSVI. This information will be needed if results from
this and other research confirms that future therapeutic trials are warranted.

IMHO and as painful as it is to admit.. this research 'seems' of practical use**. Also, I know as fact, that this testing has been underway for at least a month utilizing imaging equipment in various Lower Mainland Hospitals.

** 1) This research should be complimentary to clinical trials. Canadians, at the very least, should be allowed access to treatment both 'compassionately', through healthcare, and 'by choice' through private health care.
2) Dr T

[Jugular]

Although true, it also seems to defy logic that among the most valuable study results might be those specifically aimed at disproving CCSVI.

If they use their negative creativity to prove there is nothing to CCSVI, go over their methods to find them valid or not. That's the value of skepticism, both positive and negative creativity are essential if we have any hope of finding the real answers.

While I think that is normally true, Dr. Freedman's name will only add credence to the results if they support CCSVI. So why bother? Either way he's likely to get egg on his face.

Worse, each of these studies plans on once again making use of Doppler ultrasound. Oh brother, here we go again.

[Lyon]

.

[scorpion]

Worse, each of these studies plans on once again making use of Doppler ultrasound. Oh brother, here we go again.

I couldn't agree more. Someone HAS to come up with something less invasive and more accurate or this whole thing is just going to be a continuation of trying to make a case with faulty data.

It's a terrible conundrum in that it's no better to say that we need to wait because the science isn't here yet than it is to proceed with inconclusive tests.

Yet we got to this point through the use of ultrasound to detect CCSVI right? In his original study, from what I remember, Zamboni used ultrasound to detect "blockages".

[Lyon]

.

[Jugular]

At least the BC/Sask. study is on the right track

The goal of the BC/SASK CCSVI study is to verify the condition itself, and the usefulness of non-invasive techniques to screen for CCSVI. This information will be much needed if results from this study, and other research projects being undertaken, confirm that future therapeutic trials are warranted. This study is the only funded project that will use three diagnostic tests to investigate how to image CCSVI. Specifically, we are investigating the use of catheter venography as the "gold standard" to detect CCSVI. This is more comprehensive than ultrasound alone. Both ultrasound and Magnetic Resonance Imaging of the veins (MRV) will be compared to catheter venography to determine which of these tests are adequate and reliable for detecting CCSVI in the near future.

Frankly, until this groundwork is put down, CCSVI prevalence studies relying on detection tools that are not calibrated for error will be building themselves on sand.

[Jugular]

Yet we got to this point through the use of ultrasound to detect CCSVI right? In his original study, from what I remember, Zamboni used ultrasound to detect "blockages".

We surely did, but now that we are here, we are not married to his original methodology. This shouldn't be about proving or disproving Zamboni. It should be about exploring how blood flow and venous malformations might be involved in MS. Egos, should checked at the door.

[Shayk]

Hi all

Given all the discussion about "ultrasound" I thought some of you might find this research from Dr. Zamboni of interest.

The full text of this article is available and was published on line in 2008.

Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis

According to the TCCS-ECD screening, patients and HAV-C further underwent selective venography of the azygous and jugular venous system with venous pressure measurement.

Sharon

[Lyon]

.

[Shayk]

I hope the people doing the BC/Sask study are familiar with Dr. Zamboni's work from 2007.

Intracranial venous haemodynamics in multiple sclerosis

Moreover, ultrasonic methodologies are sometimes criticized as
being strictly operator-dependent and, in addition, TCCS is not a
technique widely in use. However, it should be noted that the proposed
ultrasonic assessment is a simple, non-invasive, reproducible
test that can easily be performed in the clinical setting, and there is
general agreement on the reliability of the proposed technique (Zipper
et al., 2002).

To conclude, altered venous haemodynamics could be an overlooked
piece in the complex MS puzzle, one that might explain the
possible contribution of venous drainage to the process of both
inflammation and neurodegeneration.

We'll see what they find.

[Jugular]

Pablo wasn't as confident in the groundbreaking paper that he published a year later that you directed us to (thank-you) earlier

The ECD-TCCS protocol was performed once by a single team of investigators (EM and PZ: vascular technician and interpreting physician, respectively), thus not permitting the assessment of the intraobserver and interobserver variability coefficient. This is a limitation of our study because the assessment of the reproducibility of the proposed protocol, although beyond the aim of the present study, certainly deserves further investigation. However, it should be noted that our ultrasonic assessment can be easily performed in the clinical setting, and, despite the operator-dependency of ultrasounds, there is general agreement on the proposed technique

It seems that use of DU as a screening tool may be more art than science and thus the variance in the replication studies employing it. This is why I am concerned that these studies might be intending to rely upon DU as an initial screening tool.
Yes, DU is non-invasive and therein lies its charm - especially in controlled
studies. But if you are using a device as a scientific tool to determine
inclusion or exclusion, that tool needs to be calibrated before you start
basing any conclusions on the data it collects.

[sbr487]

Its tough to believe that this study will not suffer the well known bias of Freedman : Although true, it also seems to defy logic that among the most valuable study results might be those specifically aimed at disproving CCSVI.

If they use their negative creativity to prove there is nothing to CCSVI, go over their methods to find them valid or not. That's the value of skepticism, both positive and negative creativity are essential if we have any hope of finding the real answers.

I might look overly negative here but I will make just couple of points -

1) one often tends to find what one is looking for or observer's bias generally creeps in - the case of Dr. Samuel Morton is just one example

The same thing is applicable even to Dr. Z had it not been for others who are able to see the same thing or for patients who get better to add credence to his theory

2) its pretty well known that results can be spun in multiple directions depending on what one is interested in. One need not even fudge the data for this. If this was not the case most of the MS drugs would not be a reality.

[Lyon]

.