Administrative Core

行政核心

• 批准号: 10911671
• 负责人: ISAAC S. KOHANE
• 金额: $ 355万
• 依托单位: HARVARD MEDICAL SCHOOL
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-04-19 至 2028-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10911671
• 关键词: Acceleration; Address; Area; Biomedical Research; Caring; Clinical; Clinical Data; Clinical Research; Collaborations; Data; Data Coordinating Center; Development; Diagnosis; Diagnostic; Disease; Education; Ensure; Evaluation; Evidence based practice; Feedback; Foundations; Future; Generations; Genomics; Goals; Infrastructure; Institution; Knowledge; Lead; Leadership; Medical; Methods; Outcome; Outcome Assessment; Patient Care; Patients; Phase; Process; Protocols documentation; Provider; Public Relations; Rare Diseases; Reporting; Research; Research Support; Science; Technology; Work; data management; data sharing; design; experience; follow-up; genomic data; improved; innovation; medical specialties; novel; operation; outreach; patient engagement; process improvement; programs; rare condition; recruit; success; web platform

PROJECT SUMMARY Without access to a connected and streamlined process for diagnosis, research, and care, many patients with rare conditions go from one institution to the next without a diagnosis or advancements in their care. In order to address this problem, infrastructure and protocols to support the diagnostic process and generate knowledge about underlying disease mechanisms were created as part of the Undiagnosed Diseases Network (UDN). The Administrative Core of the Data Management Coordinating Center (DMCC) for Diagnostic Centers of Excellence will advance infrastructure developed in the UDN and support novel methods to accelerate diagnosis, research, and care for patients with undiagnosed conditions. The Administrative Core will be responsible for uniting both the DMCC and broader Network. Development of partnerships will be crucial to the Administrative Core in order to scale operations and ensure the Network is sustainable in the future. The Administrative Core will organize its work around accomplishing the following three specific aims: 1) Drive and advance DMCC and Network operations by providing scientific leadership and robust infrastructure, 2) Identify and eliminate barriers to evaluation, diagnosis, research, and follow-up for patients with undiagnosed conditions, and 3) Initiate and cultivate strategic partnerships and educational initiatives to expand network impact.

项目概要 由于无法获得连接且简化的诊断、研究和护理流程，许多患者 罕见疾病在没有诊断或护理进展的情况下从一个机构转移到另一个机构。为了 解决这个问题，基础设施和协议来支持诊断过程并生成知识 关于潜在疾病机制的信息是作为未诊断疾病网络 (UDN) 的一部分创建的。这 诊断中心数据管理协调中心 (DMCC) 的行政核心 卓越将推进 UDN 中开发的基础设施并支持加速的新方法 对未确诊患者的诊断、研究和护理。行政核心将是 负责统一 DMCC 和更广泛的网络。发展伙伴关系对于 管理核心，以扩大运营规模并确保网络在未来可持续发展。这 行政核心将围绕实现以下三个具体目标来组织其工作： 1) 推动和 通过提供科学领导力和强大的基础设施来推进 DMCC 和网络运营，2) 确定 消除未确诊患者评估、诊断、研究和随访的障碍 条件，以及 3) 发起和培养战略伙伴关系和教育举措以扩大网络 影响。