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Clinical and Genetic Evaluation of Individuals with Undiagnosed Disorders through the Undiagnosed Diseases Network (UDN)

The Undiagnosed Diseases Network (UDN) is an initiative to facilitate the diagnosis of conditions that have eluded diagnosis through the coordinated action of leading clinical and research centers. The purpose of this cooperative research network is to establish a national network added to and building upon the NIH Undiagnosed Diseases Program (NIH UDP). The objectives of this program are to:

  1. Improve the level of diagnosis and care for patients with undiagnosed diseases through the development of common protocols designed by a community of investigators;
  2. Facilitate research into the etiology of undiagnosed diseases, by collecting and sharing standardized, high-quality clinical and laboratory data including genotyping, phenotyping, and documentation of environmental exposures; and
  3. Create an integrated and collaborative research community across multiple clinical sites and among laboratory and clinical investigators prepared to investigate the pathophysiology of these new and rare diseases and share this understanding to identify improved options for optimal patient management.

Note: Study data was collected in two phases. Phase I (9/16/2015-8/31/2018) and Phase II (9/1/2018-present).