ORONTO - A day after delivering a budget that's likely to spark an election, the federal government announced a national monitoring system for MS patients, a group that has become increasingly vocal about the slow pace of research into treatment of the disease.

The Canadian Multiple Sclerosis Monitoring System will track disease prevalence across the country and keep tabs on which treatments seem to be the most effective — including an assessment of patients who have travelled outside Canada for the experimental "liberation" treatment to clear blocked neck veins.

Many MS patients and their supporters have criticized the Conservative government for not funding a national clinical trial of the procedure advocated by Italian vascular surgeon Dr. Paolo Zamboni. Ottawa has said it won't sponsor such a trial until there is strong scientific evidence that narrowed neck veins — which Zamboni has dubbed chronic cerebral-spinal venous insufficiency, or CCSVI — are indeed a hallmark of MS.

"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," federal Health Minister Leona Aglukkaq said in a statement Wednesday.

The surveillance network, developed with initial funding from the Public Health Agency of Canada, is aimed at providing more complete information on MS to patients, health-care professionals, researchers and policy makers, said Dr. David Butler-Jones, Canada's chief public health officer.

"We need reliable information on the health status of Canadians with MS," Butler-Jones said. "Over the long term, this system will help monitor outcomes and identify the most effective therapies in the treatment of MS. 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."

Yves Savoie, president and CEO of the MS Society of Canada, welcomed Aglukkaq's announcement, noting the MS Society had been pushing the federal and provincial governments to set up a tracking system that could help provide answers to the estimated 55,000 to 75,000 Canadians with the disabling neurological disease.

Initially, clinical and demographic information will be collected on a voluntary basis from patients attending Canada's network of 22 MS clinics, which are estimated to treat up to 80 per cent of patients, with the intention of later adding patients cared for by community-based neurologists or general practitioners, said Savoie.

“Canada has one of the highest rates of multiple sclerosis in the world," he said. "The more that is understood about the disease, its progression and the use of treatments in this country, the more people with MS can make better choices about their own care.”

Linda Molyneux of the Blocked Veins MS Research Group, which wants Canada to undertake a trial of the CCSVI-eliminating therapy, said creation of the monitoring system is a "tiny step in the right direction."

"I applaud every effort, no matter how small, that the government is making to move this issue (of CCSVI) forward," said Molyneux of Toronto, whose adult son with MS had the vein-opening procedure in Bulgaria almost a year ago.

Still, she questions the timing and motives behind the announcement.

"Well, there's an election coming up. ... It sounds to me like that's what this is about, but the government is maybe trying to be vague about it because they don't want it to sound as if they're supporting CCSVI."

Molyneux's group and other MS advocacy organizations plan to make CCSVI research an issue in Ontario's provincial election in October, and she said it may be an issue in a federal election, given that Liberal MPs like Dr. Carolyn Bennett and Dr. Kirsty Duncan have been pushing the Conservative government to support a national trial of the procedure.

Savoie doesn't believe the timing of the announcement is related to a possible federal election, but that doesn't mean the move isn't political.

"It is political because there have been public demands for action here and the government is responding."

http://www.winnipegfreepress.com/canada/breakingnews/ottawa-announces-ms--monitoring-system-to-track-disease-patterns-treatments-118521779.html