The University of British Columbia Hospital MS Clinic has received over $700,000 in provincial funding to establish a CCSVI patient registry to track multiple sclerosis patients who have undergone the so-called "liberation treatment" at clinics outside Canada.
The provincial funding will be spread over three years and allows the UBC Hospital MS Clinic to establish:
- a voluntary registry to determine the number of BC residents who have had testing and/or liberation treatment
- a means to assess the benefits and complications of the treatment
- post-care treatment guidelines
The guidelines the clinic will develop will help doctors better treat those MS patients who have undergone the treatment, which uses balloon angioplasty to open blocked neck and chest veins in an effort to relieve MS symptoms.
"We have increasing numbers of patients at UBC Hospital and other clinics across the province return to Canada after having venous treatment," Dr. Tony Traboulsee, medical director of the UBC Hospital MS Clinic and assistant professor in the UBC Faculty of Medicine, said in a statement.
"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 the risks and benefits for MS patients."
The liberation treatment is not currently offered in Canada but some patients have been seeking the treatment abroad.
It hinges on the theory that some patients have a condition dubbed CCSVI, or chronic cerebrospinal venous insufficiency, which narrows the veins that carry blood from the brain and spinal cord. Some believe the condition is a possible cause of MS or worsens the condition.
While research on the hypothesis is underway around the world, including in a study led by the UBC Hospital MS Clinic, many patients are seeking the treatment outside clinical trials.
Patients are then returning to B.C. with no plans for follow-up or clear instructions for care from the centres that delivered the treatment. In some cases, this puts the patient at significant risk.
"Ensuring patient safety and consistency of care is our first priority," says Dr. Traboulsee. "We also hope the data collected through this program will enhance the current research being conducted on this proposed theory of MS."
"We greatly support this program," Janet Palm, the president of MS Society of Canada, BC & Yukon division said in a statement.
"This funding illustrates BC's leadership on MS research and care, and will help ease the minds of British Columbians who have MS who have either explored overseas treatment or are considering it."
The UBC Hospital MS Clinic cares for 80 to 90 per cent of MS patients in B.C. It's also leading Canada's only imaging study investigating the theory of CCSVI. As well, it's home to a national clinical trial centre for new pharmaceutical therapies and houses the world's largest MS database of over 75,00 patients who have been followed for over 25 years.
In March, Health Minister Leona Aglukkaq promised a national monitoring system to track the health of multiple sclerosis patients. The system will also chart the effects of angioplasty therapy for those patients who seek the treatment for blocked veins.
http://www.ctv.ca/CTVNews/Health/20110415/ubc-ms-patient-registy-110415/