LONG-TERM OUTCOMES IN SYSTEMIC LUPUS ERYTHEMATOSUS

这个子项目是许多研究子项目中的一个 由NIH/NCRR资助的中心赠款提供的资源。子项目和 研究者（PI）可能从另一个NIH来源获得了主要资金， 因此可以在其他CRISP条目中表示。所列机构为 研究中心，而研究中心不一定是研究者所在的机构。 （二） 自动神经心理评估系统（ANAM）是一种软件程序，它利用武装部队各部门开发的测量和规范来创建对认知变化敏感的性能电池[6-10]。 几项研究已经证明ANAM能够捕获与轻度创伤性脑损伤（MTBI）相关的微妙认知变化[11，12]。 在ANAM上的性能下降，甚至在那些没有传统的神经心理学测试减少MTBI的人中观察到。 最近的研究结果表明，ANAM能够跟踪年轻成年男性运动相关脑震荡损伤后认知功能的恶化和恢复[11，12]。ANAM已用于评估成人SLE的认知功能障碍[13]。最近开发了ANAM的儿科适应性，并进行了初步验证研究。将在本方案中研究该组合是否适用于儿科NPSLE。 在这项研究中，患者自我报告的神经精神症状将与正式的神经认知测试的结果进行比较。在成人中，通过正式的神经认知测试确定，较高的主观主诉评分与较低的认知功能之间存在显著关联[14]。 类似的研究尚未在儿童期发作的系统性红斑狼疮中进行，这是本研究的重点。 与上述成人研究中描述的类似的自我评估神经精神问卷（NSAQ）适用于儿童，并将用于确定自我报告的认知是否与目前的正式神经认知测试标准相当。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. (2) The Automated Neuropsychological Assessment Metrics (ANAM) is a software program that utilizes measures and specifications developed in various branches of the Armed Forces to create a performance battery sensitive to cognitive change[6-10]. Several studies have demonstrated the ability of the ANAM to capture subtle cognitive change associated with mild traumatic brain injury (MTBI)[11, 12]. Performance decrements on the ANAM were observed even in those individuals with MTBI without decrement on traditional neuropsychological tests. Recent findings demonstrate the ANAM's ability to track deterioration and recovery of cognitive functioning following sports-related concussion injury in young adult males[11, 12]. The ANAM has been used for the assessment of cognitive impairment in adult SLE[13]. The pediatric adaptation of the ANAM has been recently developed and initial validation studies have been performed. Whether this battery is useful for pediatric NPSLE will be studied in this protocol. In this study, patient self reports of neuropsychiatric symptoms will be compared with the results of formal neurocognitive testing. In adults, there is a significant association between higher subjective complaint scores and lower cognitive function as determined by formal neurocognitive testing[14]. Similar studies have not yet been done in childhood onset systemic lupus erythematosus and are a focus of the presented research study. A Self Assessment Neuropsychiatric Questionnaire (NSAQ) similar to the one described in the studies above used in adults, was adapted for children and will be used to determine if self reports of cognition are comparable to the current standard of formal neurocognitive testing.