Southern Alberta Vasculitis Patient Registry
Summary
The University of Calgary, Division of Rheumatology is developing a Registry of patients with Vasculitis in the Southern Alberta Region.
What will the registry be used for?
• Collect information on your specific disease course, treatments and outcomes.
• To establish a blood bank to examine the profiles of patients with vasculitis to determine their clinical features and response to therapy.
• Notification of opportunities to participate in rheumatology research studies in the Calgary region.
• Notification of educational activities (seminars, patient newsletters) in the Calgary region.
Taking part in this study involves?
For this study, you will meet with Dr. Fifi-Mah or Dr Garner, rheumatologists at South health Campus, once a year. At your annual visit, your medical history will be reviewed and you will have a physical exam performed. You will be asked to complete a questionnaire about your symptoms and quality of life. You will also have a blood test done. We expect each of these study visits to last up to 30 minutes in duration. We would arrange the study visits when you are due to attend the hospital for your scheduled clinical appointments so you will not have any additional hospital visits.
What about the Confidentiality
Your participation in this study is completely voluntary. Please note that your non-participation will not affect the quality of care you’ll receive from your health care provider. All communications will remain confidential between you and the research team.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Eligible ages: 15 to 100
Inclusion criteria:
You may be eligible to participate in the Registry if:
• You have diagnosis of Wegener's granulomatosis (recently renamed Granulomatosis with polyangiitis), microscopic polyangiitis, Churg Strauss syndrome (recently renamed Eosinophilic granulomatosis with polyangiitis), Polyarteritis Nodosa, giant cell arteritis, Takayasu’s arteritis, other primary vasculitis: such Behçet’s disease, Henoch schonlein Purpura and others.
Exclusion criteria:
not diagnosed with vasculitis
Participate
Additional information
Contact information
Dr. Aurore Fifi-Mah and Dr Stephanie Garner- Phone: (403) 956-2493 Fax: (403) 956-2994
Principal investigator:
Aurore Fifi-Mah
Clinical trial:
No
REB-ID:
REB14-2064