Undiagnosed Diseases Network (UDN) Clinical and Data Coordinating Center

About this grant

NINDS intends to support a new phase of the Undiagnosed Diseases Network (UDN) to advance diagnosis for individuals with previously undiagnosed diseases and undiagnosed diseases research. This phase would emphasize participant and family engagement, provider engagement, use of NIH and non-NIH resources, education, community engagement, research innovation and discovery, and broader implementation of advanced diagnostic approaches. The Network is expected to include a Clinical and Data Coordinating Center (CDCC), clinical Networks of Diagnostic Excellence, the NIH Undiagnosed Diseases Program (UDP), a Diagnostic Research Innovation Center, individuals with lived experience, patient advocacy organizations, NIH, and other stakeholders. NINDS anticipates supporting a CDCC to provide operational oversight and coordination for network activities including recruitment, participant support (e.g., patient navigation services, referring diagnosed participants to potential therapeutic options), protocol and regulatory management, data sharing, innovation in analytics, support for the systematic re-evaluation of unsolved UDN cases, collaboration, training, implementation science research to facilitate the transfer of successful UDN diagnostic approaches into mainstream medical care, and quality oversight and performance monitoring of the network. Applicants should demonstrate the infrastructure, staffing, governance, regulatory capacity, informatics systems, operational readiness, and stakeholder partnerships necessary to assume CDCC responsibilities with minimal start-up time following award. Applications are not being solicited at this time. This Forecast is being published to provide potential applicants time to plan, develop meaningful collaborations, and responsive projects.