Wednesday February 21st 2018

MS patients encouraged to take part in study

A new web-based study has begun that will document and track the experiences of Albertans who suffer from MS, in particular those who have had the Zamboni treatment or other similar procedures.

Researchers at the University of Calgary and University of Alberta, along with experts from the Multiple Sclerosis community, have worked since December 2010 to put the study together.

The Zamboni treatment, which is not approved for use in Canada, is being offered in other countries to treat chronic cerebrospinal venous insufficiency (CCSVI).

CCSVI is a syndrome associated with reduced blood drainage between the brain and heart that some researchers believe is linked to MS.

“Many people told us about their improved mobility and quality of life after the Zamboni procedure, but care must be taken because some patients experienced adverse effects and even death,” said Gene Zwozdesky, Minister of Health and Wellness, “We want to learn more, so I am asking Albertans with MS to participate in this new study. This will help us in making decisions about follow-up care for those who have received the treatment abroad. It will also help determine safety and will support the design of effective clinical trials.”

The Alberta Multiple Sclerosis Initiative (TAMSI) study will include a self-administered online survey, available at www.tamsi.com that patients with MS or related conditions, once registered, will fill out at 6, 12, 18 and 24 month intervals.

The study will match up anecdotal information with files from patients’ electronic health records from physician visits or medical tests.

Participants will be able to indicate their willingness to be considered for participation in future research.

“In order to fully understand the benefits of treatment and possible complications of CCSVI as it relates to MS, we need the personal, first-hand accounts of Albertans living with MS,” said Neil Pierce, president of MS Society, Alberta and Northwest Territories. “The TAMSI study will increase our ability to track people’s treatment experience and advance our knowledge.”

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