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

项目摘要 系统性红斑狼疮是一种全身性自身免疫性疾病，是终身的，可以危及生命。 高达15-20%的SLE患者在儿童期（<18岁）被诊断。尽管据估计， 在美国有10，000名儿童患有儿科发病的SLE（pSLE），自然史，治疗模式 这一弱势儿童群体在获得护理和护理方面的差异并不理想， 定义了我们建议将现有的登记研究扩展到1100例pSLE患者， 长达10年，以彻底评估生物/疾病相关因素以及非生物因素 因素，包括卫生保健的获得，社会经济差距和卫生保健行为，如减少 药物依从性，这可能会影响短期和长期pSLE结果。更好地定义 这些风险因素对结果的贡献将为未来的干预措施提供信息，以改善健康和福祉。 pSLE患者中。

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.