Administrative Core
行政核心
基本信息
- 批准号:10911671
- 负责人:
- 金额:$ 355万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 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:
- 关键词:AccelerationAddressAreaBiomedical ResearchCaringClinicalClinical DataClinical ResearchCollaborationsDataData Coordinating CenterDevelopmentDiagnosisDiagnosticDiseaseEducationEnsureEvaluationEvidence based practiceFeedbackFoundationsFutureGenerationsGenomicsGoalsInfrastructureInstitutionKnowledgeLeadLeadershipMedicalMethodsOutcomeOutcome AssessmentPatient CarePatientsPhaseProcessProtocols documentationProviderPublic RelationsRare DiseasesReportingResearchResearch SupportScienceTechnologyWorkdata managementdata sharingdesignexperiencefollow-upgenomic dataimprovedinnovationmedical specialtiesnoveloperationoutreachpatient engagementprocess improvementprogramsrare conditionrecruitsuccessweb platform
项目摘要
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.
项目总结
如果没有连接和简化的诊断、研究和护理流程,许多患有
罕见的情况从一个机构到下一个机构,没有诊断或在他们的护理方面取得进展。为了
解决这一问题、基础设施和协议,以支持诊断过程并生成知识
作为未诊断疾病网络的一部分,创建了关于潜在疾病机制的报告。这个
诊断中心的数据管理协调中心(DMCC)的管理核心
卓越将推动在统一数字网络中开发的基础设施,并支持新的加速方法
诊断、研究和护理未确诊疾病的患者。行政核心将是
负责联合DMCC和更广泛的网络。伙伴关系的发展将对
管理核心,以扩大业务规模并确保网络在未来可持续发展。这个
行政核心将围绕实现以下三个具体目标来组织工作:1)推动和
通过提供科学的领导力和强大的基础设施来推进DMCC和网络运营,2)确定
并为未确诊的患者消除评估、诊断、研究和随访的障碍
条件,以及3)发起和培育战略伙伴关系和教育倡议,以扩大网络
冲击力。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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{{ truncateString('ISAAC S. KOHANE', 18)}}的其他基金
Coordinating Center for the Undiagnosed Disease Network Phase II
未确诊疾病网络二期协调中心
- 批准号:
10599377 - 财政年份:2022
- 资助金额:
$ 355万 - 项目类别:
Increasing the power of GxE detection by using multi-locus genome-wide predictors
通过使用多位点全基因组预测因子提高 GxE 检测的能力
- 批准号:
8806011 - 财政年份:2015
- 资助金额:
$ 355万 - 项目类别:
Neuropsychiatric Genome-Scale and RDOC Individualized Domains (N-GRID)
神经精神基因组规模和 RDOC 个体化域 (N-GRID)
- 批准号:
8698507 - 财政年份:2014
- 资助金额:
$ 355万 - 项目类别:
Neuropsychiatric Genome-Scale and RDOC Individualized Domains (N-GRID)
神经精神基因组规模和 RDOC 个体化域 (N-GRID)
- 批准号:
8929310 - 财政年份:2014
- 资助金额:
$ 355万 - 项目类别:
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