Undiagnosed Diseases Network (UDN) Clinical Networks of Diagnostic Excellence

NINDS intends to support multiple clinical Networks of Diagnostic Excellence (NODEs) as part of the next phase of the Undiagnosed Diseases Network (UDN). Unlike prior phases, clinical NODEs are expected to function as geographically distributed regional clinical networks rather than single-site centers. Each clinical NODE would establish and lead a regional network built on existing partnerships with academic medical centers, hospitals, clinics, federally qualified health centers, and other community-based clinical partners to broaden access to specialized diagnostic expertise and extend the reach of the UDN. Clinical NODEs are expected to provide a coordinated, multidisciplinary and participant-centered evaluation of individuals with highly challenging, difficult-to-diagnose conditions. In collaboration with the Network, clinical NODEs will recruit and enroll participants, conduct medical record reviews, make enrollment determinations, communicate review outcomes and recommendations to participants and referring providers, and coordinate the clinical evaluation with local partner sites and referring providers, as appropriate. In addition, clinical NODEs will participate in network collaborations to develop and test innovative, new diagnostic tools and strategies for both genomic and non-genomic conditions, support systematic re-evaluation of unsolved UDN cases, and conduct research to optimize participant access and experience. Clinical NODEs are also expected to participate in network governance and infrastructure; provide training to support consistent implementation of UDN processes and standards; incorporate participant and community input into workflows and engagement strategies, such as through a Community Advisory Board or comparable mechanisms; and monitor site performance. Applications are not being solicited at this time. This Forecast is being published to provide potential applicants time to plan, establish collaborations, formalize regional partnerships, and prepare responsive projects.