What is the Undiagnosed Diseases Network?
The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institute of Neurological Disorders and Stroke (NINDS). 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.
Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases, and contribute to the understanding of how the human body works.
Undiagnosed Disease Network Foundation
The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients.
Who is in the network?
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 located in 12 cities across the United States:
CLINICAL SITES
| Baylor clinical site | Baylor College of Medicine/Texas Children’s Hospital/Baylor St. Luke’s Medical Center | Houston, TX |
| CHOP-UPenn clinical site *closed to new applications (cerrado a nuevas solicitudes) | Children’s Hospital of Philadelphia/University of Pennsylvania | Philadelphia, PA |
| Duke clinical site | Duke Undiagnosed Diseases Program | Durham, NC |
| Harvard clinical site *closed to new applications (cerrado a nuevas solicitudes) | Mass General Brigham/Boston Children’s Hospital Undiagnosed Diseases Program | Boston, MA |
| Indiana University | Indiana University Undiagnosed Rare Disease Clinic | Indianapolis, IN |
| Mayo clinical site | Mayo Clinic | Rochester, MN |
| Miami clinical site | University of Miami Miller School of Medicine | Miami, FL |
| NIH Undiagnosed Diseases Program (UDP) clinical site | NIH Undiagnosed Diseases Program | Bethesda, MD |
| Stanford clinical site | Stanford Center for Undiagnosed Diseases | Palo Alto, CA |
| UAB clinical site | UAB Undiagnosed Diseases Program | Birmingham, AL |
| UCI-CHOC clinical site | University of California Irvine/Children’s Hospital of Orange County | Orange County, CA |
| UCLA clinical site *closed to new applications (cerrado a nuevas solicitudes) | California Center for Rare Diseases at UCLA | Los Angeles, CA |
| University of Washington and Seattle Children’s Pacific Northwest clinical site | University of Washington School of Medicine/Seattle Children’s Hospital | Seattle, WA |
| Utah clinical site *closed to new applications (cerrado a nuevas solicitudes) | University of Utah Intermountain West clinical site | Salt Lake City, UT |
| Vanderbilt clinical site | Potocsnak Center for Undiagnosed and Rare Disorders at Vanderbilt University Medical Center | Nashville, TN |
| WashU clinical site | Washington University in St. Louis Undiagnosed Diseases Network clinical site | St. Louis, MO |
At the clinical sites, doctors and healthcare providers, like neurologists, immunologists, nephrologists, endocrinologists, and geneticists, come together to help find the cause of participant symptoms.
The Sequencing Core, where genetic testing 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 other organisms. The Metabolomics Core, located at the Mayo Clinic in Rochester, MN, provides the UDN with advanced tools to study biological markers that might be related to disease.
How can I apply to be a UDN participant?
You can visit our How to Apply page to learn more and begin the UDN application process.