VANCOUVER – British Columbia has launched a patient registry to better understand the impact – both positive and negative – of a controversial treatment to unblock neck veins in people with MS and to develop the best followup care for those who have had the procedure.
The treatment is based on a hypothesis by Italian vascular surgeon Dr. Paolo Zamboni that a condition he dubbed chronic cerebrospinal venous insufficiency, or CCSVI, may be linked to multiple sclerosis. The theory suggests that narrowed neck veins create a backup of blood that can lead to lesions in the brain and inflammation.
The procedure to widen the veins using balloon angioplasty is not approved in Canada for treating people with MS, but thousands of Canadians have reportedly gone to clinics outside the country for the treatment – only to return home with no plan for followup care.
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Some patients are treated using stents to prop open their veins. These tubular devices can cause blockages and bleeding, or they can dislodge and migrate, requiring emergency surgery. Patients with stents must take blood-thinning medications, which also can cause severe complications in some cases.
Data from the BC CCSVI Registry, developed by the UBC Hospital MS Clinic at Vancouver Coastal Health, will help shape treatment guidelines for ongoing care and identify risks to patients who participate in future clinical trials of the procedure in Canada.
“We have increasing numbers of patients at UBC Hospital and other clinics across the province who have received interventional venous treatment,” Dr. Tony Traboulsee, medical director of the UBC Hospital MS Clinic, said Thursday in a release.
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“Often they are uncertain as to whether to tell their neurologist they have had the procedure, and in turn neurologists are uncertain as to appropriate after-care. Our goal is to establish province-wide standards of care and better understand both the benefits and the risks for MS patients.”
The registry operates on a voluntary basis. Patients who enrol will be followed for three years via four telephone interview surveys, which will ask questions about the patient’s recent CCSVI procedure, their health and activities. They may be asked to provide medical records and-or a detailed medical history about their MS.
“We are pleased this registry is ready to start,” said Janet Palm, president of the MS Society’s B.C. and Yukon division. “This program is much needed and will help ease the minds of British Columbians who have MS, who have either explored overseas treatment for CCSVI or are considering it.”
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Online:
MS Society: http://www.mssociety.ca/bc
Vancouver Coastal Health Research Institute: http://www.vchri.ca; click the CCSVI – MS button on the home page.
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