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The NIH Undiagnosed Diseases Network expands
Program Snapshot
The Common Fund’s Undiagnosed Diseases Network (UDN) is a research study to improve the level of diagnosis of rare and undiagnosed conditions. In the United States, it has been estimated that approximately 25 million Americans suffer from a rare disorder. The UDN established a nationwide network of clinicians and researchers who use both basic and clinical research to uncover the underlying disease mechanisms associated with these conditions. In its first 20 months, the UDN accepted 601 participants undiagnosed by traditional medical practices. Of those who completed their UDN evaluation during this time, 35% were given a diagnosis. Many of these diagnoses were rare genetic diseases including 31 previously unknown syndromes. The UDN is currently accepting participant applications..
- Twelve Clinical Sites (including the NIH UDP)
- Coordinating Center
- Sequencing Core
- Two Model Organisms Screening Centers
- Metabolomics Core
- Central Biorepository
The goal of the Common Fund Program is to form a sustainable national resource to diagnose both rare and new diseases, advance laboratory and clinical research, enhance global coordination and collaboration among laboratory and clinical researchers, and share resulting data and approaches throughout the scientific and clinical communities.
Who is in the Network?
The UDN is a group of clinical and research centers across the United States. More information about the centers that make up the UDN can be found here.
Future plans to support the Undiagnosed Diseases Network
Common Fund programs are established with defined goals and a ten year limit to achieve them. The Common Fund goal for the UDN was to establish and test a new model of collaboration across clinical sites to extend the NIH intramural Undiagnosed Diseases Program to extramural centers. The current program is expected to end in July 2023. For the final year of the program, NIH will provide supplements and extensions to the UDN extramural clinical sites, Coordinating Center, and some Cores to ensure that all participants accepted by the end of the ninth year are evaluated as the program transitions to a larger, self-sustained network. The intramural Undiagnosed Disease Program, housed within the NIH Clinical Center and currently supported as a UDN clinical site, will continue to receive support and oversight from multiple NIH Institutes and Centers.
Multiple NIH Institutes and Centers released a funding announcement to support a Data Management and Coordinating Center to provide infrastructure and research support for a new network of clinical sites. Clinical sites with the appropriate infrastructure, expertise, and resources needed to conduct the clinical evaluation and DNA sequencing of participants enrolled at their sites can apply for designation as a Diagnostic Center of Excellence. Diagnostic Centers of Excellence will have access to resources of the Data Management and Coordinating Center. Support for UDN components via NIH Institutes and Centers ensures a trans-NIH approach to supporting UDN activities beyond the 10 year lifespan of a Common Fund program.
Contact
For more information about the UDN or application process, individuals can contact the UDN Coordinating Center by:
- Telephone
- Toll-free from USA, Canada, Mexico: 1-844-RING UDN (746-4836)
- From all other countries: 1-617-432-2344
Email: UDN@hms.harvard.edu
Or Visit the UDN Coordinating Center Website
This page last reviewed on March 28, 2023