Diagnosing the Unknown for Care and Advancing Science (DUCAS)

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ABSTRACT Individuals with rare conditions often experience long diagnostic odysseys, which cause physical and emotional burdens and delay effective treatment and management. The Undiagnosed Diseases Network (UDN) has made significant progress in collaborative clinical and research approaches to provide answers to patients with undiagnosed conditions. However, critical areas require attention, including access to research approaches and representation from communities experiencing health disparities. As the Data Management Coordinating Center (DMCC), we aim to address these gaps and enhance the UDN's impact. Our specific aims are to provide essential research infrastructure, increase outreach to underserved communities, and optimize research efficiency through technical solutions. By expanding research capabilities, engaging communities experiencing health disparities, and leveraging advanced technologies, this research will advance the diagnosis and understanding of rare and undiagnosed conditions, benefiting patients, the scientific community, and the healthcare system.