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Canadian Post-Market Study of Enzyme Replacement Therapy (ERT) for Fabry Disease |
Patient Fact Sheet
Federal and Provincial governments and two drug developers are about to enter into a three-year funding agreement to support an independent post-market study of enzyme replacement therapies for Fabry Disease.
The purpose of this study is to contribute to a better understanding of this rare disease and the effectiveness of the enzyme replacement therapies that the two drug companies have developed to treat it.
The study was developed and will be conducted by the Canadian Fabry ERT Research Consortium, a group of recognized expert clinicians in the treatment of Fabry Disease. It includes Canadian Fabry guidelines for ERT treatment developed by clinical experts. The Canadian Institute of Health Research (CIHR) and the Fonds de la recherche en santé du Québec (FRSQ) will oversee the study.
All patients in Canada with Fabry disease are eligible for enrollment in this study, which consists of the collection of clinical findings to learn more about the nature of this highly variable disease. Fabry patients who meet the criteria for treatment will be provided enzyme replacement therapy.
There are five regional centres across Canada, each with a principal investigator (clinical expert) who will coordinate the study within their geographic area.
For more information about the study contact the regional centre closest to you.
Regional Centres and Infusion Sites | Location | Infusion Sites | Regional Contact | Contact Information | Nova Scotia
New Brunswick
Prince Edward Island
Newfoundland
| Halifax
St. John’s |
Dr. Michael West | 902-473-4023
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| | Québec | Montréal
Sherbrooke | Dr. Daniel Bichet | 514-338-2486
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| | Ontario | Toronto
London
Hamilton
Ottawa
Kingston | Dr. Joe Clarke | 416-813-5340
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| Manitoba
Saskatchewan
Alberta | Calgary
Edmonton
Winnipeg
Saskatoon | Dr. Robin Casey | 403-943-7587
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| | British Columbia | Vancouver | Dr. Sandra Sirrs | 604-875-5965 or
604-875-4111 ext. 66902
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Patients from the Yukon, Northwest Territories and Nunavut would be referred to the Regional Centre they
would normally be referred to.
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