Patient Assessment Resource Core (PARC)

患者评估资源核心 (PARC)

• 批准号: 10466934
• 负责人: Charles L. Dumoulin
• 金额: $ 16.72万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-16 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10466934
• 关键词: Address; Adolescent; Adult; Advocate; Age; Algorithms; Anatomy; Area; Assessment tool; Awareness; Biological Markers; Caring; Child; Childhood; Chronic Childhood Arthritis; Clinical Assessment Tool; Clinical Data; Clinical Research; Collaborations; Collection; Communities; Computerized Medical Record; Data; Data Collection; Data Display; Databases; Development; Diagnostic tests; Doctor of Philosophy; Encephalitis; Ensure; Fibromyalgia; Functional Magnetic Resonance Imaging; Genomics; Goals; Health; Health Benefit; Image; Imaging technology; Indiana; Intervention; Kentucky; Knowledge; Lead; Link; Lung diseases; Lupus; Magnetic Resonance Imaging; Measures; Medical; Medical center; Medicine; Methodology; Modern Medicine; Modernization; Musculoskeletal; Musculoskeletal Diseases; Ohio; Outcome Assessment; Outcome Measure; Pain; Patient Outcomes Assessments; Patient-Focused Outcomes; Patients; Pediatric Hospitals; Personal Satisfaction; Phenotype; Population; Protocols documentation; Registries; Reporting; Research; Research Design; Research Personnel; Research Support; Resources; Rheumatology; Scientific Advances and Accomplishments; Self Assessment; Services; Severities; System; Systemic Lupus Erythematosus; Techniques; Translating; Translations; Universities; Visualization; Work; biomechanical test; care outcomes; clinical biomarkers; clinical care; clinical center; clinical decision support; clinical decision-making; college; comparative effectiveness study; dashboard; data registry; diagnostic tool; evidence base; imaging modality; improved; innovation; innovative technologies; insight; joint inflammation; musculoskeletal ultrasound; neuroimaging; neuroimaging marker; neuropsychiatry; next generation; non-invasive imaging; novel; outreach; outreach program; personalized approach; personalized medicine; personalized therapeutic; point of care; programs; radiological imaging; research study; systemic juvenile idiopathic arthritis; therapeutic effectiveness; tool; treatment response; ultrasound

ABSTRACT/ PROJECT SUMMARY The primary objective of this Core Center for Clinical Research (CCCR) is to promote impactful research in pediatric rheumatic and non-inflammatory musculoskeletal diseases (PMSKD) by the local and national Research Community with a focus on enhancing well-established research programs and institutional expertise in juvenile idiopathic arthritis (JIA), childhood- onset systemic lupus erythematosus (cSLE) and juvenile-onset fibromyalgia (JFM). This CCCR, which is called the Pediatric musculOskeletal & RheumaTology Innovation COre center (PORTICO), will be served by a Patient Assessment Resource Core (PARC) which will offer cutting-edge, age-appropriate clinical assessment tools for capturing the benefits of health interventions and delineating PMSKD phenotypes. The proposed Director of PARC is Charles Dumoulin, PhD and the Associate Director is Esi Morgan, MD, MSCE, both well-established researchers. The specific aims of the PARC are: (1) Provision of state-of-the-art imaging services to support research studies in PMSKD, (2) Development of new imaging-based methods and scoring systems to assess the severity of PMSKD and the efficacy of novel PMSKD treatments, and (3) Development of data display tools to quantify treatment impact as measured by patient reported outcome (PRO) assessments, imaging data, and biomarkers for research innovations to inform clinical decision making. With the PARC, PORTICO proposes to establish an imaging core that is the first of its kind to focus on PMSKD and provide services and greater access to innovative non-invasive imaging technologies (e.g. ultrasound, magnetic resonance imaging, biomechanical assessment). Accelerating the Research Community work in the area of functional MRI methods of neuroimaging will result in new discovery in understanding of pain in JFM, JIA, and also in the study of neuropsychiatric manifestations of SLE. Other areas include application of MRI to study of lung disease in systemic JIA and the establishment of needed protocols and scoring systems in musculoskeletal ultrasound. PARC will also support researchers to integrate PROs into research studies. In collaboration with PORTICO's Methodology Core, PARC will provide the Research Community opportunity to pair PROs with imaging references, biomarkers and genomic information in data--rich electronic dashboard visualization in support of personalized medicine. Outreach and engagement with multi-center rheumatology networks will extend the reach of these advances to the rheumatology community in service to improving patient outcomes.

摘要/项目摘要 该核心临床研究中心（CCCR）的主要目标是促进影响力 小儿风湿性和非炎性肌肉骨骼疾病（PMSKD）研究 本地和国家研究社区的重点是增强良好的 少年特发性关节炎（JIA）的研究计划和机构专业知识，儿童期 - 发作系统性红斑狼疮（CSLE）和少年发作的纤维肌痛（JFM）。这 CCCR，称为小儿肌肉骨骼和风湿病创新核心中心 （门廊），将由患者评估资源核心（PARC）提供服务 尖端，适合年龄的临床评估工具，以捕获健康的好处 干预和描述PMSKD表型。拟议的PARC主任是查尔斯 Dumoulin博士和副总监是MSCE医学博士Esi Morgan 研究人员。 PARC的具体目的是：（1）提供最先进的成像 支持PMSKD研究的研究，（2）开发基于成像的新型 评估PMSKD的严重程度和新颖的方法的方法和评分系统 PMSKD治疗和（3）开发数据显示工具以量化治疗影响为 通过患者报告的结果（PRO）评估，成像数据和生物标志物的衡量 研究创新，以告知临床决策。使用PARC，Portico提议 建立一个成像核心，这是第一个专注于PMSKD并提供服务的核心 并更大的访问创新的非侵入性成像技术（例如超声，磁性 共振成像，生物力学评估）。加速研究社区工作 在功能性MRI方法的领域，神经影像学方法将导致新发现 理解JFM，JIA的疼痛，以及研究神经精神上表现的研究 sle。其他领域包括将MRI应用于系统性JIA和 在肌肉骨骼超声波中建立所需的方案和评分系统。 parc 还将支持研究人员将专业人士纳入研究。与 Portico的方法论核心，PARC将为研究社区提供配对的机会 具有成像参考，生物标志物和基因组信息的优点 - 丰富的电子 仪表板可视化以支持个性化医学。宣传和与 多中心风湿病网络将把这些进步的影响力扩展到 风湿病社区为改善患者预后服务。