Undiagnosed Diseases Network launches online application portal
The Undiagnosed Diseases Network (UDN), a clinical research initiative of the National Institutes of Health, has opened an online patient application portal called the UDN Gateway. Introduction of this application system sets the stage for the network to advance its core mission: to diagnose patients who suffer from conditions that even skilled physicians have been unable to diagnose despite extensive clinical investigation. These diseases are difficult for doctors to diagnose because they are rarely seen, have not previously been described or are unrecognized forms of more common diseases.
The new system streamlines the application process. All applications for the UDN will go through the Gateway, rather through individual clinical sites in the network. The Gateway replaces what had previously been a paper-and-mail application process for the NIH Undiagnosed Diseases Program (UDP), which now is part of the UDN.
The UDN grew out of both the success of the Undiagnosed Diseases Program at the NIH Clinical Center in Bethesda, Md. Since its 2008 launch, the UDP has reviewed more than 3,100 applications from patients around the world. More than 800 patients have been enrolled for a one-week evaluation. While about 25% of those have received some level of clinical, molecular or biochemical diagnosis, many patients remain undiagnosed.
By adding six additional clinical sites to the original NIH UDP, the UDN will broaden its diagnostic expertise while expanding the opportunity for patients to participate. These additional clinical sites are:
- Baylor College of Medicine, Houston
- Duke Medical Center, Durham, N.C., with Columbia University, New York City
- Harvard Teaching Hospitals (Brigham and Women’s Hospital, Boston Children’s Hospital, Massachusetts General Hospital), Boston
- Stanford Medical Center, California
- University of California at Los Angeles Medical Center
- Vanderbilt University Medical Center, Nashville, Tenn.
By the summer of 2017, each new clinical site will accept about 50 patients per year. The network has also brought on board two DNA sequencing facilities. One is at the Baylor College of Medicine, and the other is at the HudsonAlpha Institute for Biotechnology in Huntsville, Alabama, with Illumina in San Diego.