MS Societies to fund seven CCSVI research projects
Dr. Paolo Zamboni looks on before speaking about the breakthrough medical research he has done at the Neurologist Seminar in Toronto on Wednesday, April 14, 2010. (Nathan Denette / THE CANADIAN PRESS)
CTV.ca News Staff
Published Friday, June 11, 2010 9:33PM EDT
MS societies in Canada and the United States have announced they are releasing funds to study the effectiveness of a new, unproven treatment for multiple sclerosis.
The treatment is based on research by an Italian physician named Paolo Zamboni, who found abnormalities in the veins that drain blood from the brain and spine in people who suffer from MS. He dubbed the condition CCSVI, or chronic cerebrospinal venous insufficiency, and set about alleviating the blockages.
Zamboni's work was featured in reports on CTV's W5 this year, prompting wider interest in the controversial theory.
Under pressure from patients eager to receive the new treatment, the MS Society of Canada said Friday it is committing $700,000 to study the link between CCSVI and MS. South of the border, the National MS Society said it will spend $1.7 million for the same purpose.
Together, the two organizations say they will fund seven research projects on CCSVI.
"The MS Society of Canada is committed to funding strong science, backed by research goals that move us forward in our pursuit to end MS," Yves Savoie, president and CEO of the MS Society of Canada said in a statement.
"I am very pleased that grantees, their collaborators and their host institutions will help us play a part in better understanding CCSVI and its relationship to MS."
One of the studies awarded funds is being conducted by a team of researchers from the University of British Columbia, Vancouver Coastal Health Research Institute and the University of Saskatchewan. They plan to recruit 100 participants with MS as well as 100 people in a control group who don't have the disease.
"Our goal is to verify the condition itself, and the usefulness of non-invasive techniques that would make it easier to screen for CCSVI," the study's lead researcher, Dr. Anthony Traboulsee at the University of British Columbia, said in a statement.
Another of the funded studies will be conducted by Dr. Brenda Banwell at the Toronto Hospital for Sick Children's pediatric MS clinic, in the hopes of determining whether vein blockages also occur in young MS patients.
"We do feel that the kids have the ability to teach us something really important here," Banwell said.
"I think if it's absent in children, that will add a lot of weight to the concern that this finding is an observation perhaps in selected MS patients, but it's not a fundamental part of MS," she said.
But if the study finds that CCSVI is more frequent in children with MS, "then I think it adds an enormous weight in the ‘this is important' aspect," she said.
Two other studies led by Dr. Carlos Torres at the University of Ottawa and Dr. Fiona Costello at the University of Calgary have also earned funding to explore CCSVI.
The seven new research studies are to pick up on Zamboni's findings, examining whether CCSVI causes MS, hoping to reconcile "conflicting data" from previous studies and possibly paving the way for medical trials to determine whether treating CCSVI improves or changes the condition of MS patients.
But some say the funding is far less than expected. "For context, over the last two years the MS Society has granted $21.1 million in research grants," said Kate Bahen of Charity Intelligence a group that analyzes charitable organizations.
Bahen says the CCSVI research accounts for 3 per cent of research spending.
"This research isn't expected to produce results until June 2012 and will only involve 430 people with MS in the initial scans," Bahen said. "The other estimated 54,500 people with MS will have to wait at least two years."
Most Canadian research teams interested in CCSVI suggest that funding in the range of $500,000 to $600,000 is needed to properly conduct a trial.
"CCSVI is a serious legitimate medical theory that requires rigorous research. I am worried that this isn't enough funding to adequately do this work, preferably in a timely manner," Bahen said.
Surprisingly, the research team from McMaster University and St. Joseph's Hospital in Hamilton, which had applied for funding, and are preparing for a study, were not given any funding from the MS Society. Nor was the research team at University of Buffalo, where Dr. Robert Zivadinov has been conducting pioneering research on CCSVI.
Others say that the research projects ignore evidence being collected at clinics in Poland, Europe and the U.S.
"I would note this research, when it is all done and published, will not bring us any notable understanding that we don't already have today," said Ashton Embry, the father of a patient with MS and Member of an MS support group based in Alberta called Direct MS. "This is classic stall research which will delay any real research which will test the efficacy of CCSVI treatment."