News Feature | July 3, 2014

NIH Picks Vanderbilt, 5 Other Universities To Be Part Of Rare Diseases Network

By Marcus Johnson


Vanderbilt University’s Medical Center was chosen as one of the six clinical sites for the NIH’s Undiagnosed Diseases Network. Medical facilities participating in the network will work to identify, research, and treat rare diseases. Other Universities selected for the Network include, Baylor College of Medicine, Duke University, and Stanford University, among others.

The program was originally established in 2008 at the NIH in Maryland, and it was recently determined that the program would be expanded. Since the expansion of the Undiagnosed Diseases Network, the NIH has discovered two diseases that were previously unclassified. The program has also found 15 genes that were not previously associated with human diseases.

Dr. John A. Phillips III one of the medical professors working in the Vanderbilt program, called the Undiagnosed Diseases Network one of the “crown jewels” of the NIH. "We have perhaps — the estimates are still not exact — 23,000 genes," Phillips said. "We know of only about 4,000 diseases that are caused by one of those genes. So, if you do the math, that means there are about 19,000 genes that we don't know of any disease that goes with them."

The Vanderbilt researchers will focus on genomic causes, genetic causes, and environmental factors in their search of rare diseases. Phillips noted that the university wasn’t only trying to find new diseases, but was trying to use the NIH’s resources to get better at treating the rare diseases the researchers did find.

Every university participating in the program will receive a four year grant totaling $7.2 million, which will be used to help fund research. The Harvard Medical Center will operate as the program’s coordination center. 

The NIH aims to admit 50 patients annually by 2017. The NIH will not turn patients away because of a lack of insurance coverage, but all admissions will be done by medical staff.