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

ICLIC-MS 增强多发性硬化症的结果研究和临床护理

基本信息

批准号：
10425332
负责人：
LISA F BARCELLOS
金额：
$ 57.69万
依托单位：
UNIVERSITY OF CALIFORNIA BERKELEY
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-08-14 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10425332
关键词：
Address Area Big Data Biological Biology Biometry California Clinic Clinic Visits Clinical Clinical Data Clinical Investigator Clinical Research Clinical assessments Cognition Cognitive Collection Consumption Data Data Collection Development Disease Disease Progression Electronic Health Record Employment Employment Status Environmental Exposure Epidemiologic Methods Ethnic Origin Ethnic group Family Female Funding Opportunities Genetic Genomics Goals Health Health Maintenance Organizations Impaired cognition Individual Internet Intervention Lead Light Machine Learning Magnetic Resonance Imaging Measures Mental Depression Methods Multiple Sclerosis Neurologist Neurology Outcome Outcome Measure Outcome Study Outcomes Research Pathogenesis Patient Care Patient-Focused Outcomes Patients Performance Physicians Pilot Projects Population Predictive Factor Preparation Prevention strategy Primary Health Care Progressive Disease Quality of life Race Recording of previous events Reporting Research Resources Risk Factors Sampling Source Structure Technology Testing Time Unemployment Validity and Reliability Visit Work base clinical care clinical outcome measures cognitive function cohort comorbidity disability electronic data health plan human genomics improved male member multi-ethnic multidisciplinary multiple sclerosis patient new technology physically handicapped prevent programs remote assessment response sex web based interface web-based tool

项目摘要

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.

项目总结