Undiagnosed Diseases Network

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The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institutes of Health Common Fund. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.[1][2][3][4] It was established in 2014.[5]

The UDN is made up of a Coordinating Center, Clinical Sites, and Core Facilities (“Cores”).

The Coordinating Center, which coordinates the work of the UDN, is based at the Department of Biomedical Informatics at Harvard Medical School.

The Clinical Sites, where UDN participants are evaluated, are at Baylor College of Medicine, Duke Medicine, Harvard University teaching hospitals (Brigham and Women’s Hospital, Boston Children’s Hospital, Massachusetts General Hospital), the National Institutes of Health Clinical Center, Stanford Medical Center, University of California at Los Angeles Medical Center, and Vanderbilt University.

The two Sequencing Cores, where genetic testing for the UDN is performed, are at Baylor College of Medicine and HudsonAlpha Institute for Biotechnology.

UDN has made plans to add additional components, including a Model Organisms Screening Center to help the network to understand how specific genetic changes might contribute to disease by studying those changes in other organisms and a Metabolomics Core to study biological markers that may be related to disease.

References

  1. ^ Captain, Sean. "Welcome to the Cloud Hospital, Where Big Data Takes On Mysterious Medical Conditions". Fast Company. Retrieved 23 November 2015.
  2. ^ Gahl, William A.; Wise, Anastasia L.; Ashley, Euan A. (3 November 2015). "The Undiagnosed Diseases Network of the National Institutes of Health". JAMA. 314 (17): 1797. doi:10.1001/jama.2015.12249. PMID 26375289.
  3. ^ Hartnett, Kevin. "A powerful new way to diagnose mystery illnesses". Boston Globe. Retrieved 23 November 2015.
  4. ^ "Undiagnosed Diseases Network (UDN)". The Common Fund. National Institutes of Health Office of Strategic Coordination. Retrieved 23 November 2015.
  5. ^ Spillmann, Rebecca C.; McConkie-Rosell, Allyn; Pena, Loren; Jiang, Yong-Hui; Schoch, Kelly; Walley, Nicole; Sanders, Camilla; Sullivan, Jennifer; Hooper, Stephen R.; Shashi, Vandana (17 April 2017). "A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network". Orphanet Journal of Rare Diseases. 12 (1). doi:10.1186/s13023-017-0623-3.{{cite journal}}: CS1 maint: unflagged free DOI (link)