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

项目摘要/摘要 CREATE联盟的行政核心负责协调和支持所有活动 CREATE联盟，使这个罕见疾病临床研究联盟(RDCRC)能够实现 其科学、教育和利益攸关方的参与目标，并作为罕见的 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生物库和 基因组活动，以及外展和联络活动。因此，管理核心充当 联合体，其主要目标是促进有效的议定书制定和执行；促进 在联盟内部以及与患者权益倡导团体和其他关键利益攸关方进行沟通；以及 与RDCRN数据管理和协调中心(DMCC)合作，专门促进网络 活动，并更广泛地促进罕见病研究。行政核心的具体目标， 作为续签申请的一部分，将：(1)实施高效和有效的流程，以支持 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 护理人员；以及(3)开发和传播对更广泛的科学界有价值的资源 从事肌萎缩侧索硬化症及相关疾病研究。其中包括创建数据存储库、创建 创建基因组数据(可通过圣裘德云获得)和肌萎缩侧索硬化工具包，这是一个模块 在Epic电子健康记录内开发，便于系统地收集结构化的 在多学科ALS诊所接受治疗的患者的临床/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.