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]

UDN was established in 2014[5] with seven clinical sites. As of 2019, twelve clinical sites are open; the National Institutes of Health (Bethesda, MD), Harvard Medical School, Duke University in collaboration with Columbia University, Baylor College of Medicine, University of California at Los Angeles, University of Miami, Vanderbilt University School of Medicine, University of Pennsylvania, University of Utah, University of Washington, Washington University in St. Louis. Share resources include a central biorepository, sequencing core, metabolomics core, and animal research centers.[6]

By May 2017, 1519 patients had been referred to UDN, and around 40% of the cases were accepted.[7] 260 UDN patients have received a diagnosis.[8]

References[edit]

  1. ^ Captain, Sean (2015-11-03). "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): 1797–8. 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): 71. doi:10.1186/s13023-017-0623-3. PMC 5392939. PMID 28416019.
  6. ^ "UDN Sites". UDN. Retrieved 8 January 2019.
  7. ^ Splinter, Kimberly; Adams, David R.; Bacino, Carlos A.; Bellen, Hugo J.; Bernstein, Jonathan A. (29 November 2018). "Effect of Genetic Diagnosis on Patients with Previously Undiagnosed Disease". New England Journal of Medicine. 379 (22): 2131–2139. doi:10.1056/NEJMoa1714458. ISSN 0028-4793. PMID 30304647.
  8. ^ Kolata, Gina (7 January 2019). "When the Illness Is a Mystery, Patients Turn to These Detectives". The New York Times.