Health Minister Leona Aglukkaq is promising a national monitoring system to track the health of multiple sclerosis patients.
The goal of the Canadian Multiple Sclerosis Monitoring System (CMSMS) will be to better gauge how MS progresses and which treatments work and don't work, the minister announced Wednesday.
Patients who undergo an experimental procedure called the liberation treatment to clear blocked veins in their necks and chests will also be monitored as part of the program.
"The health and safety of Canadians is of the highest importance, and we need reliable, national information on MS to help those diagnosed with MS and their health care providers," Aglukkaq said in a news release Wednesday.
"Over the long term, this system will help monitor outcomes and identify the most effective therapies in the treatment of MS," added Chief Public Health Officer, Dr. David Butler-Jones.
"The information can also help health system planners identify future needs and plan resource distribution more effectively, to ensure those diagnosed with MS have access to the care they need."
Neurologist Dr. Tony Traboulsee, president of the Canadian Network of MS Clinics, called the registry "a milestone in MS treatment and care" that will give doctors "a better picture of disease patterns."
The Canadian Institute for Health Information will receive funding to establish the registry. CIHI will work with the provinces and territories, the Canadian Network of MS Clinics and the MS Society of Canada to gather data on patient symptoms and various treatments, including medications.
The surveillance system will also track Canadian patients who travel overseas to seek the liberation treatment. The treatment, pioneered by Italian vascular surgeon Dr. Paolo Zamboni, uses small balloons to open narrowed veins in the neck.
No medical centres in Canada are performing the treatment outside of a clinical trial. So many patients have been travelling overseas, spending upwards of $20,000 to seek treatment at clinics in Costa Rica, Poland, and elsewhere.
While some patients have returned home reporting no benefits from the procedure, many others say the treatment has relieved some of their symptoms, or given them increased energy.
Without the registry, it's been hard to track how many MS patients have undergone the treatment outside of Canada and how many are experiencing complications.
Aglukkaq reiterated that the treatment will not be allowed in Canada, based on the advice of an expert panel set up by the Canadian Institutes for Health Research and the MS Society of Canada. That panel discouraged studies of the treatment until scientists are convinced by research data that the condition is commonly found in those with MS.
Newfoundland is currently studying patients who have been sought the treatment abroad, to see if they do have measurable benefits in their MS symptoms, which can include difficulties walking, problems with vision, fatigue, and weakness.
As well, Alberta is about to launch a study underway to track multiple sclerosis patients who go overseas to seek the treatment. The goal of the three-year study is to determine the safety of the treatment and to assess the patient-reported impact.
MS Society president and CEO Yves Savoie welcomed the creation of the monitoring system, saying there are many questions about MS that still need to be answered.
