Component B: Improving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry

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PROJECT SUMMARY Systemic Lupus Erythematosus is a systemic autoimmune condition which is life long and can be life threatening. Up to 15-20% of all SLE patients are diagnosed in childhood (<18 years of age). Although it is estimated that up to 10,000 children in the United States have pediatric-onset SLE (pSLE), the natural history, treatment patterns and variation, access to care and disparities in care for this vulnerable population of children have not been well defined. We propose to expand the existing registry to a goal of 1100 pSLE patients followed longitudinally for up to ten years, in order to thoroughly assess the biologic/disease related factors, as well as the non-biologic factors, including health care access, socioeconomic disparities and health care behaviors, such as reduced medication adherence, which can impact short and long-term pSLE outcomes. Better definition of the contribution of these risk factors to outcomes will inform future interventions to improve the health and well- being of patients with pSLE.