[Long-term prognosis and outcome of patients with primary systemic vasculitis: initial results in Germany]

Some outcome parameters have been shown to represent valuable measures for the long-term assessment of primary systemic vasculitides (PSV). These parameters include disease extent, disease activity, damage, and the health-related quality of life. We describe a concept for the establishment of a detailed documentation system for PSV with a duration of at least 5 years to obtain a reliable characterization of these patients. This database will provide the basis for a PSV cohort and the development of an interdisciplinary patient education concept followed by an evaluation with a multicenter, trial.