ICLIC-MS for Enhancing Outcomes Research and Clinical Care in Multiple Sclerosis

项目摘要 认知障碍、身体残疾和疾病进展很常见，但研究不足 对个人就业和整体生活质量产生重大影响的临床结果 多发性硬化症（MS）我们最近开发并验证了一个辅助的，基于网络的 工具（ICLIC-MS），用于MS验证的系统性和纵向临床结局数据收集 认知功能指标、身体残疾和疾病进展指标， 在电子健康记录（EHR）中可靠地捕获。响应FOA# PA-17-010，使用 技术，以提高病人的结果和预防疾病，我们的团队提出的研究 在一个超过3000人的大型多种族人群代表性样本中， 来自Kaiser Permanente北方加州健康计划的女性和男性MS病例 会员资格我们将整合其他EHR数据，例如重要的共病情况、 疾病修饰治疗、MRI报告以及生活质量测量和就业 历史我们的目标包括：1）全面表征大型MS的临床结局 2）开发和利用综合MS健康报告以增强患者护理; 和3）建立MS临床结局研究资源， 基因组和环境暴露数据。我们提出的研究结果代表了一个 这是一个非常好的机会，可以促进MS的有效长期管理，加速进展 了解疾病的发病机制，预测患者的发展轨迹， 战略布局我们组建了一支在临床神经病学/MS神经病学方面拥有丰富专业知识的团队， 先进的流行病学方法，EHR结构和健康维护中的临床护理 组织，人类基因组学，生物统计学和大数据方法。

PROJECT SUMMARY Cognitive impairment, physical disability and progressive disease are common but understudied clinical outcomes that substantially impact employment and overall quality of life for individuals with multiple sclerosis (MS). We have recently developed and validated an assisted, web-based tool (ICLIC-MS) for systematic and longitudinal clinical outcomes data collection of MS-validated cognitive function measures, physical disability and progressive disease measures that are not reliably captured in the electronic health record (EHR). In response to FOA# PA-17-010, Use of Technology to Enhance Patient Outcomes and Prevent Illness, our team proposes the study of MS outcomes in a large, multi-ethnic population representative sample of more than 3,000 female and male MS cases from the Kaiser Permanente Northern California Health Plan Membership. We will integrate other EHR data such as important comorbid conditions, use of disease modifying therapy, MRI reports, as well as quality of life measures and employment histories. Our goals include: 1) comprehensively characterizing clinical outcomes in a large MS patient cohort; 2) developing and utilizing an integrated MS health report to enhance patient care; and 3) establishing a resource for clinical outcomes research in MS that also includes whole genomic and environmental exposure data. Findings from our proposed study represent an extraordinary opportunity to facilitate effective long-term management of MS, accelerate progress in the understanding of disease pathogenesis, predict patient trajectories and inform prevention strategies. We have assembled a team with strong expertise in clinical neurology/MS neurology, advanced epidemiologic methods, EHR structure and clinical care within a health maintenance organization, human genomics, biostatistics, and big data approaches.