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.

项目总结/摘要 肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）合作研究中心（CRC） 网络创建于2017年，旨在促进多学科研究，以告知病因，发病机制和 治疗ME/CFS，这是一种使人衰弱的、复杂的、多系统疾病，影响大约0.9%的 全球人口。尽管研究人员已经确定了多种疾病病因学假设， 生物过程中的差异模式，触发ME/CFS症状的潜在机制， 他们的待遇仍然不明。在该网络的下一个周期，需要采取全面的办法 （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测量，和（4）确定潜在的治疗目标。支持这些 数据管理和协调中心（DMCC）将作为研究的基础资源， 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）;和（3）实时研究状态仪表板，以监测CRC招募和 保持和跟踪研究进展。此外，作为该网络目前的DMCC，RTI具有独特的定位， 通过以下方式促进数据挖掘/整合以及网络内外的临床数据和生物样本共享： 扩大我们公开的在线ME/CFS研究工具mapMECFS的功能和范围， 搜索MECFS。具体而言，DMCC将继续支持网络和CRC的工作 加强我们的研究工具，以帮助确定ME/CFS的原因，并发现更好的诊断方法， 通过完成我们的三个具体目标， 目标。目标1.通过扩大内容、用户群和 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. 通过加强沟通，提高研究效率，促进合作和协调， 教育部/爱幼学校的内部和外部合作伙伴，并向社区康复中心提供后勤和行政支助。的 DMCC将由多名主要研究者（mPI）琳达莫里斯布朗、公共卫生硕士、公共卫生博士和马修共同领导 Schu博士他们共同带来了58年的经验，在多地点财团协调，项目 管理、开展和监测观察性研究，基于网络的数据收集工具， 标本采集、结果公布和去识别数据共享。我们的mPI领导力模型配对 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。 成功地有效地跨越网络的临床，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