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

项目总结/摘要 CReATe联盟的行政核心负责协调和支持所有活动 CReATe联盟，使这个罕见疾病临床研究联盟（RDCRC）能够实现 其科学、教育和利益攸关方参与目标，并作为稀有资源的一部分有效运作， 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，监督CReATe生物储存库， 基因组活动以及外联和联络活动。因此，行政核心作为一个枢纽， 联盟，主要目标是实现有效的协议开发和执行;促进 在联盟内部以及与患者倡导团体和其他关键利益相关者的沟通;以及 与RDCRN数据管理和协调中心（DMCC）合作， 活动，并更广泛地促进罕见疾病研究。行政核心的具体目标， 作为此续期申请的一部分，应：（1）实施高效和有效的流程， CReATe联盟研究活动的科学严谨性和生产力;（2）促进合作 与患者倡导团体和其他战略合作伙伴建立伙伴关系，包括患者、家属和 （3）开发和传播对更广泛的科学界有价值的资源 从事ALS及相关疾病的研究。其中包括CReATe数据存储库、CReATe 生物储存库，CReATe基因组数据（可通过St. Jude Cloud获得）和ALS工具包，一个模块 在Epic电子健康记录中开发，便于系统地收集结构化的 来自在多学科ALS诊所接受护理的患者的临床/表型数据。

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.