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OBJECTIVE Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for(More)
OBJECTIVE To evaluate risk factors for subclinical atherosclerosis in a population of patients with pediatric systemic lupus erythematosus (SLE). METHODS In a prospective multicenter study, a cohort of 221 patients underwent baseline measurements of carotid intima-media thickness (CIMT) as part of the Atherosclerosis Prevention in Pediatric Lupus(More)
OBJECTIVE To analyze patterns of daily pain, stiffness, and fatigue related to juvenile arthritis; to examine the relationships of demographics, disease severity, and psychological adjustment to daily disease symptoms; and to examine daily disease symptoms as predictors of reduced participation in school and social activity. METHODS For a 2-month period,(More)
Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease, in which neuropsychiatric manifestations are a common cause of significant morbidity. The American College of Rheumatology has identified 19 distinct neuropsychiatric syndromes associated with SLE, although the 1982 American College of Rheumatology classification criteria for SLE(More)
OBJECTIVES The purpose of this study was 3-fold: 1) to assess the feasibility of a daily diary for use with children with juvenile rheumatic disease (JRD), 2) to describe daily variation in mood, stressful events, and symptoms in children with JRD, and 3) to examine the extent to which daily mood and daily stressful events predict daily symptoms in children(More)
Thrombophilia can result from either inherited or acquired conditions. We describe a teenager who developed extensive thrombosis requiring aggressive and prolonged anticoagulation. Laboratory evaluation revealed an acquired lupus anticoagulant, consistent with the antiphospholipid antibody syndrome (APS). DNA analysis revealed inherited thrombophilic(More)
OBJECTIVE To obtain preliminary data regarding the efficacy and long-term safety of leflunomide in patients with refractory polyarticular-course juvenile rheumatoid arthritis (JRA). METHODS Twenty-seven patients were entered into the initial 26-week open-label study of leflunomide therapy; 17 entered the extension phase (maximum 107 weeks). Mean disease(More)
While modern treatments for systemic lupus erythematosus (SLE) have resulted in greatly improved long term outcome in children and adults, complications of atherosclerosis have become a major cause of morbidity and mortality. Although children and adolescents with SLE rarely experience adverse cardiovascular events before adulthood, dyslipoproteinemia and(More)
Analgesic trials pose unique scientific, ethical, and practical challenges in pediatrics. Participants in a scientific workshop sponsored by the US Food and Drug Administration developed consensus on aspects of pediatric analgesic clinical trial design. The standard parallel-placebo analgesic trial design commonly used for adults has ethical and practical(More)
This article introduces important issues related to pain in children with musculoskeletal pain syndromes and rheumatic disease, using juvenile primary fibromyalgia syndrome (JPFS) and juvenile idiopathic arthritis (JIA) as models. A brief summary of the prevalence of pain in healthy children is followed by a summary of existing pain-assessment techniques.(More)