Antiphospholipid Syndrome Alliance for Clinical Trials and International Networking (APS ACTIONInternational Clinical Database and Repository
Antiphospholipid syndrome (APS) is a disorder that manifests clinically as recurrent venous or arterial thrombosis and/or fetal loss. APS can occur as a primary condition or secondary to an autoimmune disease such as systemic lupus erythematosus (SLE)(1). The aim of this study is to establish a registry or database to assess outcomes, response to treatment, treatment preferences and disease characteristics of patients with Primary Antiphospholipid Syndrome (PAPS) and also of those with APS secondary to SLE. A registry with a collection of clinical data with a large cohort will identify areas to conduct clinical trials. Currently, clinical trials are needed to increase evidence base and optimize the management of APS (4). In addition, any differences of outcomes of those with PAPS compared with APS and SLE will be evaluated. Literature review revealed conflicting reports Vianna, JL, et al, observed similar outcomes in these cohorts (2). In contrast, Danowski, A, et al, suggest those with APS and SLE have an increased incidence of arterial thrombosis, venous thrombosis, and fetal loss than in those with primary APS (3). The outcomes of these types of studies will offer support for rheumatologists monitoring patients with APS. 200 subjects will be enrolled at this site.
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