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

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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.