Federal government to fund CCSVI clinical trial through CIHR

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

Federal government to fund CCSVI clinical trial through CIHR

Postby PointsNorth » Wed Jul 13, 2011 4:11 pm

How convenient!? MS clinic & CIHR neurologists continue to call the shots! I'm curious what others think . . . everything under the watchful eyes of the almighty finger-nose neurologists. I need a holiday. To Brooklyn, NY perhaps? :?


CCSVI Update - Federal government to fund CCSVI clinical trial through CIHR

--------------------------------------------------------------------------------
June 30, 2011

Dr. Anthony Traboulsee
Yesterday, on June 29, the Canadian government announced that it will be funding a CCSVI clinical trial through CIHR. CIHR has yet to develop the criteria or timelines for the application process, including the amount of funding that will be granted and the number and size of studies that will be funded. As soon as this has been established, CIHR will be putting out a call to research groups across Canada to apply for funding.

MS Society Response: http://mssociety.ca/en/releases/nr_20110629.htm


Q: What does this announcement mean for patients of UBC Hospital MS Clinic?
A: Once the grant application protocol is announced, UBC Hospital MS Clinic researchers and clinicians will review the grant application procedure, at which point they will be able to determine whether or not they will apply to undertake or participate in the trial.

Interventional venous treatment for CCSVI is not available in Canada and is still considered very experimental. Staff and clinicians at UBC Hospital MS Clinic still do not recommended Canadians travel outside the country to seek treatment at this point as we currently do not fully understand the safety implications and effectiveness and sustainability of the procedure.

Q: The UBC Hospital MS Clinic is currently doing one CCSVI related study with Saskatchewan; what is the current status of BC/SASK collaborative CCSVI research study?
A: Researchers are using three diagnostic tests to investigate CCSVI as a medical condition and determine how best to image it. Specifically, researchers are studying both MS patients and healthy controls to better understand the prevalence of abnormal vein activity in both populations. The team is also investigating the use of catheter venography as the "gold standard" to detect CCSVI. Catheter venography is being compared with ultrasound and Magnetic Resonance Imaging to determine which of these tests are adequate and reliable for detecting CCSVI.

The study has been underway at the UBC Hospital MS Clinic and the MS Clinic at Saskatchewan General Hospital for several months. 200 patients have been enrolled. It is the largest comprehensive imaging study of CCSVI that has ever been undertaken. The study concludes December 2011.

Q: What other CCSVI activities is the UBC Hospital MS Clinic involved in?
A: UBC Hospital MS Clinic has launched a new program to better understand the impact of interventional venous treatment. The Clinic has received over $700,000 in provincial funding to establish a CCSVI patient registry, care-related protocols, and a rapid access pathway to expert care for both patients and health care providers. This program has been established to follow British Columbians who have undergone interventional venous treatment oversees in the past 12-18 months.

The provincial funding is spread over three years and allows the UBC Hospital MS Clinic to establish post-care treatment guidelines; a voluntary registry to determine the number of BC residents who have had testing and/or liberation treatment overseas, and the perception of benefits and complications; and a rapid-access to expert care pathway. This key component of the program will enable health care providers across the province to reach one of the experts at the UBC Hospital MS Clinic in situations of need.
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Postby PointsNorth » Wed Jul 13, 2011 4:36 pm

Found this on CCSVI Locator and thought it was relevant to this discussion. Apologies for responding to my own post! :oops:

Dr. Barry B. Rubin and CCSVI research in Canada. by CCSVI in Multiple Sclerosis

Some have asked why the case of the second Canadian death was reported in the press, when the family had initially asked for privacy back in April when it occurred. Dr. Barry Rubin is investigating this case, spoke about it at the Canadian MS Society meeting with Dr. Hubbard, and mentioned it to the press last week.

from The Star, June 30th--

Rubin said he remains unconvinced that CCSVI exists, and he is concerned about patients’ safety. He confirmed that a third person has died as a result of the controversial treatment, but said he could not provide any details as the death is under investigation. The two previously reported deaths happened in California and Costa Rica.

http://www.thestar.com/news/canada/poli ... --scient...

From CBC July 8th---

Dr. Barry Rubin, the head of vascular surgery at Toronto's University Health Network, is part of the Canadian government's panel that recommended a safety trial into the treatment last month.

Rubin is in contact with a physician in California.

"I subsequently phoned the physician in California and he confirmed that one patient died shortly after the procedure and a second patient had a stroke," Rubin said. "The severity of that stroke is unknown to me."

http://ca.news.yahoo.com/ms-vein-surger ... adian-20...


Dr. Barry B. Rubin is the vascular representative of Canadian CCSVI and MS research. But he doesn't think it exists. Why is he the "go to" vascular doctor for comments on CCSVI? He has been quoted in the Canadian press as being dubious of Dr. Zamboni's research since the beginning. He has made public presentations on CCSVI, which can be viewed on online.

http://www.uhn.ca/Focus_of_Care/Munk_Ca ... _Confere...

https://www.facebook.com/notes/ccsvi-in ... -rubins-...

Why was he chosen for all of the CIHR expert panels, when doctors like Dr. McDonald from Barrie, who actually have studied and treated CCSVI in patients, are not on the panels?


Dr. Rubin is a very fine vascular surgeon, and he has treated patients for a variety of vascular problems. He is the director of vascular surgery at the University of Toronto and Director of the Peter Munk Cardiac Centre. Dr. Rubin is an active researcher....but not into venous disease or phlebology. His specialty is much smaller-- the molecular medicine of bioactive phospholipids.

http://vascularsurgery.utoronto.ca/faculty/rubin.htm

Dr. Rubin is an expert in "lipid mediators" or "bioactive lipids". Many diseases, such as arthritis, cardiovascular disease, MS and diabetes are associated with chronic inflammation. An important step in finding an effective treatment is to understand the basics of an inflammatory response, including the role of bioactive lipids. Understanding how bioactive lipids regulate the disease processes will lead to the development of drugs that have more specific targets and less adverse side effects.

He recently spoke at a symposium in Japan, sponosored by Astellas and Takeda Pharmaceuticals and Kyoto University- this is from the symposium brochure:

The world of lipid mediators is expanding. New and unexpected biological functions, biosynthetic pathways and receptors are being revealed for lipids as appreciation grows for their complex interactions with protein and the genome. New actions are still being added to classic mediators such as prostaglandins and leukotrienes. Lipid mediators are now recognized to influence a broad swath of biology from inflammation to allergy, immunity, cardiovascular diseases, cancer and behavior.... Expansion of our understanding of the role of lipid mediators affords the opportunity for novel therapeutic opportunities, examples of which will be discussed in the symposium.

http://www.nature.com/natureevents/scie ... ctive_Li...

And now he's researching neuroinflammation of the spine and the role of lipid mediators. Is this for MS?--Here's his most recent paper:

Anti-inflammatory role of microsomal prostaglandin E synthase-1 in a model of neuroinflammation--(for the Institute of Clinical Pharmacology in Frankfurt- This work was supported by Deutsche Forschungsgemeinschaft Grant GE695 and the LOEWE Lipid Signaling Forschungszentrum Frankfurt.)

http://www.ncbi.nlm.nih.gov/pubmed/21075851


He's received large research grants from the US organization Vascular Cures, as one of their Wylie Scholar fellows, to study lipid mediators.

http://www.vascularcures.org/index.php/ ... olar-pro...


I realize that Dr. Rubin is quick to comment that he is not influenced by pharmaceutical companies, and I am not saying that he is. His molecular research has been funded for 15 years by the CIHR. And the targets he is looking at could be very, very helpful to those with chronic inflammation, like people with MS.


Still, the question needs to be asked....why is Dr. Rubin, a world-renowned expert in lipid mediators and inflammation, the Canadian venoplasty expert for CCSVI research? And why has he been so outspoken regarding his doubts of Dr. Zamboni's research? Why all of the comments on the dangers of venoplasty, when Dr. Siskin, Dr. Zamoni and Dr. Simka's peer-reviewed and published research have shown the safety of venoplasty for CCSVI?

Canadians need to ask the health minister to appoint a true specialist in central venous disease and phlebology to the CCSVI research panel. Especially if they want to understand CCSVI.

Joan
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Postby 1eye » Wed Jul 13, 2011 5:11 pm

I don't have anything to add, except maybe they saw that they weren't getting in on any of the action. Throwing money at a problem is a typically Canadian-government thing to do, but it will take more than money to get some people onto the side of the history pages they want to be on. Before you say it, yes I'm prognosticating again. I won't live to see the day, so I don't much care.

More safety trials, more jet fighters, it's all the same funny money to me.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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