DMCC for ME/CFS CCR: Recompete 2022

ME/CFS CCR 的 DMCC：重新参加 2022 年

• 批准号: 10626438
• 负责人: Linda Morris Brown
• 金额: $ 90.9万
• 依托单位: RESEARCH TRIANGLE INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-25 至 2028-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10626438
• 关键词: Advisory Committees; Advocacy; Affect; Applied Research; Area; Awareness; Biological Markers; Biological Process; CCR; Chronic Fatigue Syndrome; Classification; Clinical; Clinical Data; Collaborations; Collection; Common Core; Common Data Element; Communication; Communications Media; Communities; Complex; Coordination and Collaboration; Data; Data Collection; Data Coordinating Center; Data Set; Data Sources; Diagnostic; Disease; Doctor of Philosophy; Electronic Mail; Ensure; Epidemiologist; Etiology; Event; FAIR principles; Facebook; Fostering; Foundations; Future; Goals; Group Meetings; Growth; Health; Individual; Interdisciplinary Study; Intervention Trial; Leadership; Longitudinal Studies; Modeling; Monitor; National Institute of Neurological Disorders and Stroke; Newsletter; Observational Study; Online Systems; Outcome; Outcome Measure; Participant; Pathogenesis; Patients; Pattern; Persons; Pharmacogenetics; Population; Positioning Attribute; Principal Investigator; Privatization; Procedures; Productivity; Publications; Research; Research Personnel; Resource Sharing; Resources; Sampling; Science; Secure; Side; Site; Symptoms; System; Time; Time Study; Training; Twitter; United States National Institutes of Health; Update; biobank; career; cloud based; computerized data processing; dashboard; data de-identification; data exploration; data hub; data integration; data mining; data portal; data quality; data sharing; data tools; design; electronic data capture system; experience; improved; innovation; instrument; meetings; member; multiple omics; novel; outreach; patient oriented; phenotypic data; quality assurance; recruit; sample collection; sharing platform; social media; success; support network; symposium; tool; user-friendly; virtual; web platform; web site

PROJECT SUMMARY/ABSTRACT The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) Network was created in 2017 to foster multidisciplinary research to inform the etiology, pathogenesis, and treatment of ME/CFS, a debilitating, complex, multisystem disorder that affects approximately 0.9% of the population worldwide. Although researchers have identified multiple hypotheses for disease etiology and differential patterns in biological processes, the underlying mechanisms that trigger ME/CFS symptoms and their treatment remain unknown. During the next cycle of the Network, a comprehensive approach is needed to (1) identify subtypes of ME/CFS based on biological markers and symptom classifications, (2) conduct longitudinal studies to understand the time course of disease and its manifestations, (3) develop and validate outcome measures for future intervention trials, and (4) identify potential treatment targets. To support these studies, the Data Management and Coordinating Center (DMCC) will serve as a foundational resource to the CRCs by providing (1) expertise in patient-centered research, data processing, and analysis; (2) communication and social media tools to actively engage the broader ME/CFS community (e.g., ME/CFS patients, clinicians, researchers); and (3) real-time study status dashboards to monitor CRC recruitment and retention and track study progress. In addition, as the Network’s current DMCC, RTI is uniquely positioned to facilitate data mining/integration and clinical data and biospecimen sharing within and outside the Network by expanding the capabilities and reach of our publicly available online ME/CFS research tools mapMECFS and searchMECFS. Specifically, the DMCC will continue to support the endeavors of the Network and the CRCs and enhance our research tools to help define the cause(s) of ME/CFS and discover better diagnostics and treatment to improve the health outcomes for individuals with ME/CFS by accomplishing our three specific aims. Aim 1. Enable novel discovery through collaborative science by expanding the content, userbase, and functionality of the mapMECFS data sharing portal. Aim 2. Advance ME/CFS research through our secure online data portal with enhanced data collection, data sharing, and clinical/biospecimen linkage tools. Aim 3. Promote research efficiency and foster collaboration and coordination by enhancing communication with ME/CFS internal and external partners and providing logistical and administrative support to the CRCs. The DMCC will be co-led by multiple Principal Investigators (mPIs) Linda Morris Brown, MPH, DrPH, and Matthew Schu, PhD. Together they bring 58 years of experience in multisite consortia coordination, project management, conducting and monitoring of observational studies, web-based data collection instruments, specimen collection, publication of results, and sharing of de-identified data. Our mPI leadership model pairing a senior epidemiologist, Dr. Brown, with a senior bioinformatician, Dr. Schu, will continue to be key to our success in effectively spanning the clinical, scientific, and technical needs of the Network.

项目概要/摘要 肌痛性脑脊髓炎/慢性疲劳综合症 (ME/CFS) 合作研究中心 (CRC) 该网络于 2017 年创建，旨在促进多学科研究，以了解病因、发病机制和 治疗 ME/CFS，这是一种使人衰弱的复杂多系统疾病，影响约 0.9% 的患者 全世界人口。尽管研究人员已经确定了疾病病因学的多种假设， 生物过程的差异模式、触发 ME/CFS 症状的潜在机制以及 他们的治疗情况仍然未知。在网络的下一个周期中，需要采取全面的方法 (1) 根据生物标志物和症状分类识别 ME/CFS 亚型，(2) 进行 纵向研究以了解疾病的时间进程及其表现，(3) 开发和验证 未来干预试验的结果衡量标准，(4) 确定潜在的治疗目标。为了支持这些 研究中，数据管理和协调中心（DMCC）将作为基础资源 CRC 通过提供 (1) 以患者为中心的研究、数据处理和分析方面的专业知识； (2) 沟通和社交媒体工具，以积极参与更广泛的 ME/CFS 社区（例如 ME/CFS 患者、临床医生、研究人员）； (3) 实时研究状态仪表板，用于监控 CRC 招募和 保留并跟踪学习进度。此外，作为网络当前的 DMCC，RTI 具有独特的定位： 促进网络内外的数据挖掘/整合以及临床数据和生物样本共享 扩展我们公开提供的在线 ME/CFS 研究工具 mapMECFS 的功能和覆盖范围 搜索MECFS。具体而言，DMCC 将继续支持网络和 CRC 的努力 并增强我们的研究工具，以帮助确定 ME/CFS 的原因并发现更好的诊断方法和 通过完成我们的三个特定治疗来改善 ME/CFS 患者的健康结果 目标。目标 1. 通过扩大内容、用户群和协作科学，实现新发现 mapMECFS 数据共享门户的功能。目标 2. 通过我们的安全推进 ME/CFS 研究 在线数据门户，具有增强的数据收集、数据共享和临床/生物样本链接工具。目标3。 通过加强与各方的沟通，提高研究效率并促进合作与协调 ME/CFS 内部和外部合作伙伴，并向 CRC 提供后勤和行政支持。这 DMCC 将由多名首席研究员 (mPI) Linda Morris Brown、MPH、DrPH 和 Matthew 共同领导 舒，博士。他们共同带来了 58 年在多站点联盟协调、项目 管理、进行和监测观察研究、基于网络的数据收集工具， 样本采集、结果发布以及去识别化数据的共享。我们的 mPI 领导模型配对 高级流行病学家布朗博士和高级生物信息学家舒博士将继续成为我们的关键 成功有效地满足了网络的临床、科学和技术需求。

项目成果

mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites.

• DOI: 10.1186/s12967-021-03127-3
• 发表时间: 2021-11-08
• 期刊: Journal of translational medicine
• 影响因子: 7.4
• 作者: Mathur R;Carnes MU;Harding A;Moore A;Thomas I;Giarrocco A;Long M;Underwood M;Townsend C;Ruiz-Esparza R;Barnette Q;Brown LM;Schu M
• 通讯作者: Schu M

The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform.

• DOI: 10.2196/36798
• 发表时间: 2022-08-10
• 期刊: JMIR RESEARCH PROTOCOLS
• 影响因子: 1.7
• 作者: Ramiller, Allison;Mudie, Kathleen;Seibert, Elle;Whittaker, Sadie
• 通讯作者: Whittaker, Sadie