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MS trial to lead to more answers: Society

MS trial to lead to more answers: Society

Posted in By Colin

By Katie Ryan
Saskatchewan is spending $2.2 million as it moves forward on its commitment to research the liberation therapy’s effectiveness in treating multiple sclerosis.
Premier Brad Wall announced on Thursday that Saskatchewan MS patients can now apply for one of 86 spots to participate in a U.S.-based clinical trial of a vein-widening procedure, that some say can alleviate symptoms of the chronic disease.
Welcoming the news, Lloydminster MS Society executive and development director Johanna Green said the local chapter applauds the province’s commitment to MS research.
“This will be an additional source of hope for those who have taken an interest in CCSVI (chronic cerebrospinal venous insufficiency) and it’s possible links to MS. The Saskatchewan government has really, from the outset, taken a leadership role when it comes to exploring the relationship between CCSVI and MS, so this is a tangible next step in that process,” said Green. “Of course, the decision to apply or not is a very personal one. It’s up to each individual, but we are very pleased with the government for stepping up to try to find answers on this important issue.
“This is positive news,” she added. “Ultimately it’s going to lead to more answers on what the connection is between CCSVI and MS. Any step toward gaining that information is a positive one in our eyes.”
Saskatchewan MS patients interested in volunteering for the two-year, double-blind study at the Albany Medical Centre in Albany, N.Y., have until Feb. 24 to apply. Applying does not guarantee participation in the research. Prospective candidates will be randomly selected from all applications to ensure that everyone has an equal chance to participate. They will then be screened for eligibility and medically assessed.
Those invited to participate will be contacted over the next few months, with the first patients expected to travel to Albany in March 2012. The province will cover all costs and patient expenses.
“Without question, I know that many people have been waiting for this day to be able to take action and to have a chance to be involved in this research,” said Green.
“I think that it’s safe to assume that we will have a fair number of local people putting in their name.”
Lead researcher Dr. Gary Siskin, of the Albany Medical Centre, is in the final stages of Food and Drug Administration approval, according to last week’s announcement.
The clinical trial – which will involve 130 patients, of which 86 will be from Saskatchewan – is being called the largest double-blind liberation therapy study to date.
A Regina neurologist will assist the Albany research team with assessment, referrals and ongoing monitoring of Saskatchewan participants.
Some Lloydminster residents have already paid thousands of dollars to have the liberation therapy in other countries, said Green, as the treatment is not available to MS patients in Canada. While Green said she wasn’t certain as far as the exact number of local MS patients who have had the procedure, she  said there have been mixed results.
“I think a trial like this is certainly something that will provide some more tangible evidence because at this point, while anecdotal accounts are important, we all know that the clinical trials are at the heart of getting the answers that we need,” Green said.
“Unfortunately, the difficult thing is sometimes the pace at which research happens is not quick enough for those who are living with the disease here and now, and are so anxious to be able to find any type of relief that they can.”
In 2010, Saskatchewan was the first province to announce it would commit funding for research into the liberation therapy’s effectiveness in treating MS symptoms.
Multiple sclerosis is a neurological disease in which the communication ability of nerve cells in the brain and spinal cord are impaired or destroyed. An estimated 3,500 Saskatchewan residents have MS.
Canada’s prevalence rate of MS is among the highest in the world at 240 per 100,000 people; in the prairies, the rate is 340 per 100,000 people.
CCSVI support group
Once a month, the Lloydminster MS Society organizes a CCSVI support group for local residents to gain insight on the controversial liberation therapy procedure.
The support group is for any person within the community who has an interest in learning more about CCSVI, said Green, adding it provides a forum for people who have had the treatment to share their experiences and for others who are contemplating maybe having treatment done.
“It’s an open forum for people to have candid discussions about CCSVI and its possible connection to MS,” she said.
“It plays a vital role in terms of that information gathering that is so key when making such a huge, personal decision on one’s health.”
During the last meeting held on Jan. 11, Green said Saskatchewan’s clinical trial was a point of discussion. Attendance, which ranges between 10 to 15 people, could increase in February now that applications are being accepted, said Green.
The next CCSVI support group meeting will be held Feb. 8, from noon to 1 p.m. in the board room of the Community Service Centre.