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

组成部分 B：通过儿童关节炎和风湿病研究联盟 (CARRA) 狼疮登记处改善儿童狼疮护理和结果

• 批准号: 10220819
• 负责人: Aimee O Hersh
• 金额: $ 79.09万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2022-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10220819
• 关键词: Component; Improving; Pediatric; Lupus; Care

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.

项目概要 系统性红斑狼疮是一种全身性自身免疫性疾病，会持续终生并可能危及生命。 高达 15-20% 的 SLE 患者在儿童时期（<18 岁）被诊断出来。虽然估计涨了 美国有 10,000 名儿童患有儿科发病的 SLE (pSLE)，其自然史、治疗模式 这一弱势儿童群体的变化、获得照顾的机会和照顾方面的差异并没有得到很好的解决 定义的。我们建议将现有登记范围扩大到对 1100 名 pSLE 患者进行纵向随访的目标 长达十年，以便彻底评估生物/疾病相关因素以及非生物因素 因素，包括医疗保健的获取、社会经济差异和医疗保健行为，例如减少 药物依从性，这可能会影响短期和长期的 pSLE 结局。更好的定义 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 pSLE 患者。