Pediatric musculOskeletal & RheumaTology Innovation COre center (PORTICO)

小儿肌肉骨骼

• 批准号: 10680547
• 负责人: Hermine I Brunner
• 金额: $ 65.99万
• 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/10680547
• 关键词: Address; Adult; Advanced Development; Assessment tool; Biological Markers; Biometry; Caring; Child; Childhood; Chronic; Chronic Childhood Arthritis; Clinical Research; Communities; Data; Data Analytics; Data Display; Data Science; Decision Making; Development; Diagnostic; Diagnostic tests; Disease; Environment; Epidemiology; Family; Feasibility Studies; Fostering; Goals; Health; Health Benefit; Image; Informatics; Interdisciplinary Study; Intervention; Investigation; Knowledge; Laboratories; Leadership; Lupus; Magnetic Resonance Imaging; Measurement; Measures; Medical; Medical center; Medicine; Methodology; Methods; Mission; Musculoskeletal; Musculoskeletal Diseases; National Institute of Arthritis, and Musculoskeletal, and Skin Diseases; Nature; Outcome; Pain; Patient Outcomes Assessments; Patients; Pediatric Hospitals; Pilot Projects; Population; Productivity; Reporting; Research; Research Design; Research Infrastructure; Research Personnel; Research Support; Resources; Rheumatism; Rheumatology; Science; Services; Site; Statistical Data Interpretation; System; Technology; Testing; Therapeutic; Training; Translational Research; Ultrasonography; United States National Institutes of Health; biomechanical test; career; clinical care; clinical center; clinical decision-making; clinical training; curative treatments; dashboard; data acquisition; data pipeline; disability; disease phenotype; disorder control; empowerment; evidence base; health related quality of life; imaging modality; improved; innovation; insight; juvenile onset fibromyalgia; novel; novel marker; outreach program; patient engagement; patient safety; pediatric rheumatic diseases; personalized approach; point of care; precision medicine; programs; protocol development; research study; response; shared decision making; societal costs; synergism; tool

ABSTRACT/PROJECT SUMMARY - OVERALL COMPONENT Children with pediatric rheumatic and non-inflammatory musculoskeletal diseases (PMSKD) have an urgent need for evidence-based medical care that considers the striking differences between pediatric and adult populations. To address these gaps in scientific knowledge, we propose to establish a Pediatric musculOskeletal & RheumaTology Innovation COre center (PORTICO) at the Cincinnati Children' Hospital Medical Center. Objectives of PORTICO will be to promote impactful research in PMSKD, locally and nationally, with a focus on our well-established research programs in juvenile arthritis, lupus and juvenile fibromyalgia. Specific Aims are: Aim 1: To promote innovation and support clinical research with advanced data science, data analytics capabilities, and data pipeline development. Aim 2: To invigorate cross-disciplinary team science of the local but also national community of researchers in PMSKD. Aim 3: To enhance research in PMSKD by developing and offering cutting-edge assessment tools for capturing the benefits of health interventions and delineating PMSKD phenotypes. Advanced imaging services to support PMSKD research (ultrasonography, magnetic resonance imaging, biomechanical assessment) will be provided, new imaging-based methods and scoring systems developed and an interactive dashboards to synthesize information from patient reported assessments, imaging data, novel biomarkers and traditional disease measures developed in support of improved shared medical decision making. Expected result: PORTICO will create a vibrant research environment that fosters productive team science to find answers to important scientific unknowns regarding PMKSD. Innovation will be sought by (1) developing diagnostics for PMSKD (laboratory tests, imaging tests) and testing their integration into clinical care, and (2) advancing evidence-based based therapies, with focus on JIA, cSLE and JFM. Spread of PORTICO findings and increase of the local & national Research Community will be achieved by multisite research studies, PORTICO's Outreach Program, and its Pilot & Feasibility Studies Program. Alignment with the efforts of other CCCRs, other organizations involved in PMSKD research, and the local research environment is anticipated to potentiate spread of ideas and innovation by PORTICO investigators

摘要/项目摘要 - 总体组成部分 患有小儿风湿性和非炎症性肌肉骨骼疾病 (PMSKD) 的儿童面临着紧急的治疗 需要基于证据的医疗护理，考虑到儿童和成人之间的显着差异 人口。为了解决这些科学知识上的差距，我们建议建立一个儿科肌肉骨骼实验室 辛辛那提儿童医院医疗中心的风湿病创新中心 (PORTICO)。 PORTICO 的目标是在地方和全国范围内促进 PMSKD 的有影响力的研究，重点是 我们在青少年关节炎、狼疮和青少年纤维肌痛方面完善的研究项目。具体目标是： 目标 1：利用先进的数据科学、数据分析促进创新并支持临床研究 能力和数据管道开发。 目标 2： 振兴当地和国家研究人员社区的跨学科团队科学 PMSKD。 目标 3：通过开发和提供用于捕获的尖端评估工具来加强 PMSKD 研究 健康干预措施的好处和描述 PMSKD 表型。先进的影像服务支持 PMSKD 研究（超声检查、磁共振成像、生物力学评估）将 提供了新的基于成像的方法和评分系统，并开发了交互式仪表板 综合来自患者报告的评估、成像数据、新型生物标志物和传统的信息 制定疾病措施以支持改进共享医疗决策。 预期结果：PORTICO 将创造一个充满活力的研究环境，促进富有成效的团队科学 寻找有关 PMKSD 的重要科学未知数的答案。创新将通过（1）发展 PMSKD 诊断（实验室测试、影像学测试）并测试其与临床护理的整合，以及 (2) 推进循证疗法，重点关注 JIA、cSLE 和 JFM。 PORTICO 调查结果的传播 地方和国家研究团体的增加将通过多地点研究来实现， PORTICO 的外展计划及其试点和可行性研究计划。与其他人的努力保持一致 CCCR、参与 PMSKD 研究的其他组织以及当地研究环境预计将 加强 PORTICO 研究人员的思想和创新传播

项目成果

Performance of the New 2019 European League Against Rheumatism/American College of Rheumatology Classification Criteria for Systemic Lupus Erythematosus in Children and Young Adults.

2019 年新欧洲抗风湿病联盟/美国风湿病学会儿童和青少年系统性红斑狼疮分类标准的表现。

• 发表时间: 2021-04
• 影响因子: 4.7
• 作者: Aljaberi, Najla;Nguyen, Kim;Strahle, Catherine;Merritt, Angela;Mathur, Arjun;Brunner, Hermine I
• 通讯作者: Brunner, Hermine I

Quality of Care in Childhood-onset Systemic Lupus Erythematosus: Report of an Intervention to Improve Cardiovascular and Bone Health Screening.

儿童期发病的系统性红斑狼疮的护理质量：改善心血管和骨骼健康筛查的干预措施报告。

• 发表时间: 2020-10-01
• 作者: Smitherman, Emily A;Huang, Bin;Furnier, Adam;Taylor, Janalee;Burns, Mary Beth;Brunner, Hermine I;Morgan, Esi M
• 通讯作者: Morgan, Esi M

Hydroxychloroquine blood levels predicts flare in childhood-onset lupus nephritis.

羟氯喹的血液水平可预测儿童期发病的狼疮性肾炎的发作。

• 发表时间: 2022-01
• 影响因子: 2.6
• 作者: Andrade Balbi, Verena;Artur Silva, Clovis;Nascimento Pedrosa, Tatiana;Maria Rodrigues Pereira, Rosa;Maria de Arruda Campos, Lucia;Pires Leon, Elaine;Duarte, Nilo;Melechco Carvalho, Valdemir;Gofinet Pasoto, Sandra;Cordeiro do Rosário, Debora;Kola
• 通讯作者: Kola

Relationship between Genetic Risk and Age of Diagnosis of Systemic Lupus Erythematosus

系统性红斑狼疮遗传风险与诊断年龄的关系

• 发表时间: 2024-09-13
• 作者: Daniela Dominguez;Sylvia Kamphuis
• 通讯作者: Sylvia Kamphuis

Functional Ability and Health-Related Quality of Life in Randomized Controlled Trials of Tocilizumab in Patients With Juvenile Idiopathic Arthritis.

托珠单抗治疗幼年特发性关节炎患者的功能能力和健康相关生活质量的随机对照试验。

• 发表时间: 2021-09
• 影响因子: 4.7
• 作者: Brunner, Hermine I;Chen, Chen;Bovis, Francesca;De Benedetti, Fabrizio;Espada, Graciela;Joos, Rik;Akikusa, Jonathan;Chaitow, Jeffrey;Boteanu, Alina Lucica;Kimura, Yukiko;Rietschel, Christoph;Siri, Daniel;Smolewska, Elzbieta;Schmeling, Heinrike
• 通讯作者: Schmeling, Heinrike