Epidemiology of Lupus: Longitudinal Studies in Population-Based Cohorts - 2022

狼疮流行病学：基于人群的队列纵向研究 - 2022

• 批准号: 10552476
• 负责人: Aimee O Hersh
• 金额: $ 87.95万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-30 至 2027-09-29
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10552476
• 关键词: Epidemiology; Lupus; Longitudinal; Studies; Population

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 and outcomes for this vulnerable population of children have not been well defined. We propose to use the well-established Childhood Arthritis and Rheumatology Research Alliance (CARRA) pSLE registry, which currently includes 870 patients followed longitudinally for up to ten years (goal of enrolling 1300-1400 participants), in order to thoroughly assess the biologic/disease related factors, as well as the non- biologic factors, which can impact short and long-term pSLE outcomes. This proposal will address critical gaps in pSLE knowledge including description of treatments for lupus nephritis and the prevalence and outcomes of neuropsychiatric pSLE, the two primary causes of pSLE short and long-term morbidity. In addition, we will describe important patient reported outcomes including pain, quality of life and disability, and long-term outcomes, including transition to adulthood. Research findings will be disseminated through patient/family partnerships with a goal of developing future interventions to improve the health and well- being of patients with pSLE.

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)，其自然病史、治疗和 这一弱势儿童群体的结果还没有得到很好的界定。 我们建议利用建立良好的儿童关节炎和风湿病研究联盟(CARA) PSLE登记，目前包括870名患者，纵向随访长达十年(目标是登记 1300-1400人)，以便彻底评估与生物/疾病相关的因素以及非 生物因素，这可能会影响pSLE的短期和长期结果。这项提议将解决重大差距。 在pSLE知识中，包括狼疮性肾炎的治疗描述以及狼疮性肾炎的患病率和预后 神经精神性pSLE是pSLE短期和长期发病的两个主要原因。此外，我们还将 描述患者报告的重要结果，包括疼痛、生活质量和残疾，以及长期 结果，包括向成人期过渡。 研究结果将通过患者/家庭伙伴关系传播，目标是发展未来 改善pSLE患者健康和福祉的干预措施。