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Clinical Research in ALS & Related Disorders for Therapeutic Development (CReATe) - Administrative Core

ALS 临床研究

基本信息

批准号：
9803969
负责人：
Michael Benatar
金额：
$ 33.75万
依托单位：
UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
依托单位国家：
美国
项目类别：
财政年份：
资助国家：
美国
起止时间：
至
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/9803969
关键词：
Advocacy Amyotrophic Lateral Sclerosis Australia Biological Biological Markers Biometry Caregivers Caring Certification Clinic Clinical Research Cognitive Collection Communication Communities Data Disease Electronic Health Record Enrollment Ensure Environmental Exposure Epidemiologist Europe Evolution Family Caregiver Family member Fostering Foundations Frontotemporal Dementia Funding Genetic Genomics Genotype Goals Health care facility Hereditary Spastic Paraplegia Institution Mission Motor Muscular Dystrophies Neurodegenerative Disorders Outcome Patients Phenotype Pilot Projects Population Study Primary Lateral Sclerosis Process Productivity Progressive Muscular Atrophy Protocols documentation Rare Diseases Registries Research Research Activity Resources Saint Jude Children&apos s Research Hospital Sampling Science South Africa Spastic Paraplegia Standardization Steel Structure System Training Universities biobank clinical phenotype clinical research site data management data warehouse frontotemporal degeneration genomic data improved member multidisciplinary outreach patient advocacy group patient population phenotypic data protocol development synergism therapeutic development whole genome

项目摘要

Project Summary / Abstract The Administrative Core of the CReATe Consortium is responsible for coordinating and supporting all activities of the CReATe Consortium, to enable this Rare Diseases Clinical Research Consortium (RDCRC) to achieve its scientific, educational and stakeholder engagement goals, and to function effectively as part of the Rare Diseases Clinical Research Network (RDCRN). The Administrative Core is responsible for providing project management as well as data management & biostatistical support, oversight of the CReATe biorepository and genomic activity, and outreach & liaison activities. As such, the Administrative Core serves as a hub for the Consortium, with the principal goals of enabling efficient protocol development and execution; facilitating communication both within the Consortium and with patient advocacy groups and other key stakeholders; and partnering with the RDCRN Data Management and Coordinating Center (DMCC) to specifically foster Network activities and to promote rare disease research more generally. The specific aims for the Administrative Core, as part of this renewal application, are to: (1) implement efficient and effective processes that support the scientific rigor and productivity of the CReATe Consortium’s research activities; (2) promote collaborative partnership with patient advocacy groups and other strategic partners, including patients, family members and caregivers; and (3) develop and disseminate resources that are valuable to the broader scientific community engaged in ALS and related disorders research. These include the CReATe Data Repository, the CReATe Biorepository, CReATe genomic data (available through the St. Jude Cloud) and the ALS Toolkit, a module developed within the Epic electronic health record, that facilitates the systematic collection of structured clinical/phenotypic data from patients receiving care in a multi-disciplinary ALS clinic.

项目概要/摘要 CReATe联盟的行政核心负责协调和支持所有活动 CReATe 联盟的成员，使罕见疾病临床研究联盟 (RDCRC) 能够实现其科学、教育和利益相关者参与目标，并作为稀有项目的一部分有效运作疾病临床研究网络（RDCRN）。行政核心负责提供项目管理以及数据管理和生物统计支持、CReATe 生物样本库的监督和基因组活动以及外展和联络活动。因此，行政核心是联盟，其主要目标是实现高效的协议开发和执行；促进联盟内部以及与患者权益团体和其他主要利益相关者的沟通；和与 RDCRN 数据管理和协调中心 (DMCC) 合作，专门培育网络活动并更广泛地促进罕见疾病研究。行政核心的具体目标，作为本续签申请的一部分，将： (1) 实施高效且有效的流程来支持 CReATE Consortium 研究活动的科学严谨性和生产力；（二）促进协作与患者倡导团体和其他战略合作伙伴（包括患者、家庭成员和照顾者； (3) 开发和传播对更广泛的科学界有价值的资源从事ALS及相关疾病研究。其中包括 CReATe 数据存储库、CReATe Biorepository、CReATe 基因组数据（可通过 St. Jude Cloud 获取）和 ALS Toolkit（一个模块）在 Epic 电子健康记录中开发，有助于系统地收集结构化数据来自在多学科 ALS 诊所接受护理的患者的临床/表型数据。