The project aims at setting up a prospective observational cohort of patients with acquired thrombotic thrombocytopenic purpura (TTP). Patient data and biomaterial will be filed in a registry with professional database and biodata-banking for further research. Clinical questions will be addressed such as triggering mechanisms, clinical presentation, response to treatment and, especially, recurrence during long-term follow-up. New diagnostic methods will be developed and established (e.g. a flow-based ADAMTS13 assay) and laboratory research into the pathophysiology of TTP will be performed. We hope to gain new insights into the pathophysiology, diagnostic algorithms, treatment options and clinical outcome of this rare disease. Evidence-based recommendations for care givers and patients will be developed.
Besides publication in the scientific literature, our patients attending the yearly meeting of the German TTP Patient Association organized by the UMC in Mainz will be informed on important new knowledge gained. We aim to collaborate with other centers and to enroll their patients into the prospective registry in order to improve the significance of the new insights.