The Undiagnosed Diseases Network (UDN) was announced in 2014 by the National Institutes of Health (NIH) following the success of the Undiagnosed Diseases Program (UDP). The UDN is a network of medical centers across the United States that is focused on the identification of mysterious conditions that have eluded a diagnosis. The UDN establishes cooperation between researchers and clinicians to solve medical mysteries through team science.
The UDN evaluates individuals with some of the most complex and perplexing medical problems in the United States. In an effort to determine a unifying diagnosis, participants receive a comprehensive evaluation that may include laboratory testing, imaging and diagnostic procedures, along with examination by experts from many different subspecialties to provide a holistic understanding of each patient’s symptoms. The use of state of the art genomic sequencing and detailed assessment of each patient’s symptoms over the course of a comprehensive evaluation provides the UDN team with extensive, patient-specific information to be used to look for an answer for the patient and family.
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 theDepartment of Biomedical Informatics at Harvard Medical School.
The Clinical Sites, where UDN participants are evaluated, are located in 12 cities across the
Bethesda, MD (NIH Undiagnosed Diseases Program)
Boston, MA (UDN Clinical Site at Harvard Medical School)
Durham, NC (Duke University and Columbia University)
Houston, TX (Baylor College of Medicine, Texas Children’s Hospital, and Baylor CHI
St. Luke’s Medical Center)
Los Angeles, CA (UCLA Undiagnosed Diseases Clinic)
Miami, FL (University of Miami School of Medicine)
Nashville, TN (Vanderbilt Center for Undiagnosed Diseases)
Philadelphia, PA (Children’s Hospital of Philadelphia and University of
Salt Lake City, UT (University of Utah – Intermountain West)
Seattle, WA (Pacific Northwest Undiagnosed Diseases Clinical Site at University of
Washington and Seattle Children’s Hospital)
Stanford, CA (Center for Undiagnosed Diseases at Stanford)
St. Louis, MO (Washington University in St. Louis)
At the Clinical Sites, health care providers such as neurologists, immunologists, nephrologists, endocrinologists, geneticists and genetic counselors come together to help find the cause of participant symptoms.
The Sequencing Core, where genomic testing (e.g. exome and genome sequencing) for the UDN is performed, is at Baylor College of Medicine. The Model Organisms Screening Center, located at Baylor College of Medicine, Washington University in St. Louis, and University of Oregon, helps the network to understand how specific genetic changes contribute to disease by studying these changes in otherorganisms. The Metabolomics Core, located at the Mayo Clinic in Rochester, MN, providesthe UDN with advanced tools to study biological markers that might be related to disease.
Duke University Medical Center
The Undiagnosed Diseases Network is founded on the belief that collaborative, cutting-edge cross-disciplinary evaluation will accelerate the diagnosis of undiagnosed conditions, with the goals of helping patients and advancing our understanding of health and disease.
Box 103857, Duke University Medical Center, Durham, NC 27710 | Tel: 919 668 1340