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

项目总结 认知障碍、肢体残疾和进行性疾病很常见，但研究不足。 对个人就业和整体生活质量有重大影响的临床结果 患有多发性硬化症(MS)。我们最近开发并验证了一种基于Web的辅助 用于MS验证的系统和纵向临床结果数据收集的工具(ICLIC-MS 认知功能测量、身体残疾和进展性疾病测量 在电子健康记录(EHR)中可靠地捕获。针对FOA#PA-17-010，使用 为了提高患者的预后和预防疾病，我们的团队提出了这项研究 在3,000多个具有代表性的多种族人口大样本中评估多发性硬化症的结果 北加州凯撒永久健康计划的女性和男性多发性硬化症病例 会员制。我们将整合其他电子病历数据，如重要的并存情况、使用 疾病修正疗法，核磁共振报告，以及生活质量测量和就业 历史。我们的目标包括：1)全面描述大型多发性硬化症的临床结果 患者队列；2)开发和利用综合MS健康报告，以加强患者护理； 3)建立MS临床结局研究资源，该资源还包括 基因组和环境暴露数据。我们建议的研究结果代表了 促进MS的有效长期管理、加快进度的绝佳机会 在疾病发病机制的理解中，预测患者的轨迹并提供预防信息 战略。我们组建了一支在临床神经学/MS神经学方面拥有强大专业知识的团队， 先进的流行病学方法、电子病历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.