Local residents with multiple sclerosis are being asked to take part in a web-based study to track their experiences.
Officials say that in particular the study will also focus on those who have had the Zamboni treatment or other similar procedures.
Paolo Zamboni, a vascular surgeon, believes MS is not an auto-immune condition but a vascular disease he calls ‘chronic cerebrospinal venous insufficiency’ or CCSVI that can be corrected by surgery.
Meanwhile, researchers at the University of Calgary and University of Alberta, along with experts from the Multiple Sclerosis community, have worked since late last year to put the study together.
MS is described a chronic, often disabling disease of the brain and spinal cord. It is also the most common neurological disease of young adults in Canada. Most people with MS are diagnosed between the ages of 15 and 40, and its unpredictable effects last for the rest of their lives. Symptoms include vision disturbances, extreme fatigue, coordination problems, pain, depression, bladder and bowel problems and short term memory loss.
According to the MS Society, Canadians have one of the highest rates of multiple sclerosis in the world. MS is also the most common neurological disease affecting young adults in Canada. Every day, three more people in Canada are diagnosed with MS, and women are more than three times as likely to develop MS as men.
The Zamboni treatment, which is not approved for use in Canada, is being offered in other countries to treat CCSVI.
“Many people told us about their improved mobility and quality of life after the Zamboni procedure, but care must be taken because some patients experienced adverse effects and even death,” said Gene Zwozdesky, minister of health and wellness.
“We want to learn more, so I am asking Albertans with MS to participate in this new study. This will help us in making decisions about follow-up care for those who have received the treatment abroad. It will also help determine safety and will support the design of effective clinical trials.”
The Alberta Multiple Sclerosis Initiative (TAMSI) study will include a self-administered online survey, available at www.tamsi.ca that patients with MS or related conditions, once registered, will fill out at six, 12, 18 and 24 month intervals.
The study will match up anecdotal information with files from patients’ electronic health records from physician visits or medical tests.
“This study will complement other ongoing CCSVI studies to address questions that must be answered in order to design clinical trials,” said Dr. Luanne Metz, Calgary MS clinic director and TAMSI lead researcher.
“It also provides an opportunity for all Albertans with MS to participate whether they have had CCSVI treatment or not. Furthermore, participants will be able to indicate their willingness to be considered for participation in future research.”
Neil Pierce, president of the MS Society in Alberta, said first-hand accounts from those living with MS are critical to understanding the benefits of treatment and “possible complications of CCSVI as it relates to MS.
“The TAMSI study will increase our ability to track people’s treatment experience and advance our knowledge.”
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