Prognostic factors and outcome in primary systemic vasculitides in Germany

Some outcome parameters have been shown to represent valuable measures for the long-term assessment of primary systemic vasculitides (PSV). These para meters include disease extent, disease activity, damage, and the health-rel ated quality of life. We describe a concept for the establishment of a deta iled documentation system for PSV with a duration of at least 5 years to ob tain a reliable characterization of these patients. This database will prov ide the basis for a PSV cohort and the development of an interdisciplinary patient education concept followed by an evaluation with a multicenter, tri al.