Clinical Research Support Core

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PROJECT SUMMARY The clinical and biomedical research culture established in the Undiagnosed Diseases Network (UDN) and the Undiagnosed Diseases Program (UDP) led to collaborations within and across institutions that advanced diagnostic success and biological understandings. In order to provide access to this process for a broader number of patients, the individualized translational research process developed in the UDN and UDP must be scaled. The overarching goal of the Clinical Research Support Core of the Data Management Coordinating Center (DMCC) for Diagnostic Centers of Excellence (DCoEs) is to expand this model. This will be accomplished through implementation of computational models that predict likelihood of diagnosis, integration with national and international matchmaking networks, and expanding membership in the undiagnosed and rare disease ecosystem to include previously under- and unrepresented entities. To achieve this goal, the Clinical Research Support Core will focus on the following three specific aims: 1) Establish and manage Case Review Committee meetings and accelerate applicant evaluations, 2) Accelerate diagnostic success by expanding access of DCoE and UDP investigators and clinicians to expert consultants in other matchmaking networks unlimited by geography or institution and by automating and standardizing case status updates, and 3) Provide subawards to DCoEs and/or their collaborators to facilitate on-site coordination, data sharing, and pilot research projects and document progress toward overall DMCC goals.