Administrative Core

PROJECT SUMMARY Without access to a connected and streamlined process for diagnosis, research, and care, many patients with rare conditions go from one institution to the next without a diagnosis or advancements in their care. In order to address this problem, infrastructure and protocols to support the diagnostic process and generate knowledge about underlying disease mechanisms were created as part of the Undiagnosed Diseases Network (UDN). The Administrative Core of the Data Management Coordinating Center (DMCC) for Diagnostic Centers of Excellence will advance infrastructure developed in the UDN and support novel methods to accelerate diagnosis, research, and care for patients with undiagnosed conditions. The Administrative Core will be responsible for uniting both the DMCC and broader Network. Development of partnerships will be crucial to the Administrative Core in order to scale operations and ensure the Network is sustainable in the future. The Administrative Core will organize its work around accomplishing the following three specific aims: 1) Drive and advance DMCC and Network operations by providing scientific leadership and robust infrastructure, 2) Identify and eliminate barriers to evaluation, diagnosis, research, and follow-up for patients with undiagnosed conditions, and 3) Initiate and cultivate strategic partnerships and educational initiatives to expand network impact.