Southern Alberta Vasculitis Patient Registry: Creation and Utility

INTRODUCTION Vasculitides encompass a group of rare diseases where inflammation of vessels causes multisystem organ damage. Incidence, currently estimated to be 10-20/million/year, shows an increasing trend in both children and adults [1]. Due to the nature of the disease, patients need ongoing follow-up to prevent relapse, avert organ damage, and control factors associated with increased mortality. However, vasculitides can be difficult to diagnose due to the diversity of presentation and lack of disease-specific diagnostic tools. As with other rare diseases, the limited number of patients impairs recruitment into clinical trials, impedes research, and hinders the generation of evidence-based treatment recommendations and protocols [2]. Moreover, the low patient numbers provide a barrier to obtaining reliable rare disease prevalence statistics and to gaining a clear understanding of the natural history of specific vasculitides. To address some of these limitations, we propose to generate a prospective vasculitis registry for patients in Southern Alberta. This initial registry will serve as a foundation for collaboration with other centres at the provincial, national, and international levels (Figure 1). The establishment of such a registry will create a framework for knowledge translation, discovery, and best practice management. METHODS Recruitment will initially be limited to patients with vasculitis residing in Southern Alberta referred to the Rheumatology division in Calgary through the central triage system. Ethics approval was obtained in May 2012. Patients complete written informed consent at their baseline visit. Upon consenting, the patients are examined yearly by Dr. Aurore Fifi-Mah, a Rheumatologist at the South Health Campus in Calgary, Alberta. Patients also complete yearly clinical case report forms and a Patient Quality of Life form (SF-36). Patient consent also extends to the collection of de-identified sera for storage in the Mitogen Advanced Diagnostics Laboratory in Calgary, Alberta, under ...