British Columbia CCSVI Registry launched
(VANCOUVER – BC) British Columbia has launched a comprehensive CCSVI Registry. This new program, now up and running, has been developed by the UBC Hospital MS Clinic at Vancouver Coastal Health, and is supported by $700,000 in funding from the Ministry of Health.
The goal of the Registry is to better understand the impact -- both positive and negative -- of interventional venous treatment, and help develop best practices care-related protocols for patients who have had a CCSVI procedure(s).
CCSVI (chronic cerebrospinal venous insufficiency) is a hypothesis suggesting that a narrowing of the veins that carry blood to and from the brain and spinal cord has a possible association with MS. The theory proposes narrowed veins create congestion of blood that leads to iron deposits which trigger attacks of inflammation.
While wide-scale, peer reviewed research on the hypothesis and treatment of CCSVI is underway around the world, including a study led by the UBC Hospital MS Clinic, it is still considered only a theory. Treatment is not available in Canada, but MS patients have been seeking the procedure elsewhere and returning to BC without pre-planned follow-up or clear instructions for care.
Treatment for venous insufficiency involves an angioplasty procedure, by either insertion of balloon or coated metal stent. It is generally considered low risk, but because veins, unlike arteries, fluctuate in size and shape, a vein that has been opened with balloon angioplasty may rapidly narrow again. As a result, more treatments include the use of stents that stay permanently in place to open veins, and this is where difficulty can ensue. Stents can dislodge and migrate to the heart requiring emergency surgery. They can also cause blockages and hemorrhaging. All patients who undergo a procedure for stents must take blood thinning medication, which, in itself, can cause severe complications.
The BC CCSVI Registry will be an important tool to determine the patient perspective of outcome (both positive and negative), the physician perspective of outcome, and any safety concerns. This information will aid in the development of treatment guidelines for ongoing care after returning to BC, and in determining the potential risks to subjects who participate in future clinical trials in Canada.
“We have increasing numbers of patients at UBC Hospital and other clinics across the province who have received interventional venous treatment,” says Dr. Tony Traboulsee, medical director of the UBC Hospital MS Clinic, president of the Canadian Network of MS Clinics, and assistant professor in the UBC Faculty of Medicine. “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 enroll will be followed for three years via four telephone interview surveys. These surveys ask questions about the patients’ recent CCSVI procedure, their health, their activities, and their MS. They may be asked to provide medical records and/or a detailed medical history about their MS.
All data will be de-identified to protect privacy. Only aggregated and de-identified data from the Registry will be used in analyses, and at certain points within the three year period, findings will be made public.
Resources for the Registry include a dedicated toll-free number 1-800-668-2291 and email address email@example.com, registry coordinator, two patient interviewers, and a neurology resident. The Registry is overseen by Dr. Anthony Traboulsee and Dr. Dessa Sadovnick (PhD), professor of Medical Genetics and Neurology at UBC and director of endMS Western Pacific Regional Research Training Centre.
“We are pleased this Registry is ready to start,” says Janet Palm, president, MS Society of Canada, BC & 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.”
The provincial funding is spread over three years and also allows the UBC Hospital MS Clinic to establish post-care treatment guidelines and a rapid-access to expert care pathway. This key component of the program will enable health care providers across the province to reach one of the experts at the UBC Hospital MS Clinic in situations of need.
For more information about the Registry, visit the MS Society of Canada, BC and Yukon Division web page at www.mssociety.ca/bc or Vancouver Coastal Health Research Institute www.vchri.ca and click the CCSVI – MS button on the home page.
The UBC Hospital MS Clinic is led by a world renowned MS clinical research team. The Clinic, which cares for 80 – 90 percent of MS patients in BC, is globally reputed for its emphasis on treatment, education, and translational research. The MS clinical research team comprises specialists in pharmaceutical and interventional therapies, imaging, and genetics. The clinic is a national clinical trial centre for new pharmaceutical therapies; is leading an imaging study investigating the theory of CCSVI; and is home to the world’s largest MS database of over 7500 patients, many of whom have been followed for over 25 years. It is a world leader for innovative research using MRI to study and evaluate MS treatments as well as genetic epidemiology. The UBC Hospital MS Clinic is a member of the Canadian Network of MS Clinics, a national network of academic and community based clinics established for the advancement of patient services, education, and research in Multiple Sclerosis.
For media inquiries, please contact:
Lisa Carver; Vancouver Coastal Health, tel: 604.875.4111 x 61777 e-mail: firstname.lastname@example.org
Claudette Villena; MS Society Canada, tel: 416-922-6600 x 3177, email@example.com