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

项目总结 系统性红斑狼疮是一种全身性自身免疫性疾病，它是终生的，也可能危及生命。 高达15%-20%的SLE患者是在儿童时期(18岁)确诊的。尽管据估计， 至10,000名美国儿童有儿科起病的系统性红斑狼疮(PSLE)的自然病史、治疗模式 而对于这一弱势儿童群体的差异、获得护理的机会和护理方面的差距一直不太好 已定义。我们建议将现有的登记范围扩大到1100名pSLE患者进行纵向随访 长达十年，以彻底评估生物/疾病相关因素，以及非生物因素 因素，包括保健机会、社会经济差距和保健行为，如减少 服药依从性，这可能会影响pSLE的短期和长期结果。更好地定义 这些风险因素对结果的贡献将为未来改善健康和福祉的干预措施提供信息 在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.