Six medical centers received $43 million in grants from NIH to research and diagnose difficult-to-solve medical cases. The clinical sites will conduct clinical evaluations in cases that involve patients with prolonged undiagnosed conditions.
Each clinical site will contribute local medical expertise to the NIH Undiagnosed Diseases Network (UDN), a program that has been operating for the past six years. NIH UDN has been able to evaluate medical conditions for hundreds of patients and provided many diagnoses, often using genomic approaches for rare conditions.
The six sites include:
-
Baylor College of Medicine in Houston
- Boston Children’s Hospital, Brigham and Women’s Hospital, and MGH in Boston
- Duke University in Durham
- Stanford University in California
- University of California LA
- Vanderbilt University Medical Center in Nashville
With the additional six clinical sites, the NIH UDN will work with the new clinical research groups that will provide opportunities for collaboration among larger groups of expert laboratory and clinical investigators.
Physicians will be able to collect and share high quality clinical and laboratory data including genomic information. Also, UDN investigators will be able to share genomic data from UDN patients with the research community through multiple public repositories.
The network will start up and test operating procedures during the first year. It will progressively expand recruitment of patients so that by the summer of 2017, the rate of admissions at each new clinical site will be about 50 patients per year.
Go to http://ratediseases.info.nih.gov/undiagnosed for instructions on how to apply to the UDN on behalf of a patient.