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NIHs Undiagnosed Diseases Network introduces online application portal
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The NIH’s Undiagnosed Diseases Network has launched a new online patient application portal that will allow patients who suffer from conditions that specialists have been unsuccessful at diagnosing to apply to all the program’s participating clinical sites, rather than applying to sites one-by-one.
The new application portal, the Undiagnosed Diseases Network (UDN) Gateway, will replace the paper-and-mail application process that was formerly used.
“The UDN aims to improve the level of diagnosis and care for patients with undiagnosed diseases. Based upon the experience of the NIH [Undiagnosed Disease Program], we know that the need and potential are great. The UDN Gateway will expand our ability to connect with patients who may benefit from the UDN. We want to make it as easy as possible for patients and their families to apply to participate in the network,” Anastasia Wise, PhD, program director of the National Human Genome Research Institute’s Division of Genomic Medicine, and co-coordinator for the NIH Common Fund’s UDN, said in the release.
In addition to the Gateway, the UDN has added six additional clinical sites that will now cover a wider geographic range, which will each accept 50 new patients per year by 2017. Additionally, two DNA sequencing facilities have been added to the UDN network.
Since the program’s start in 2008, over 3,000 patient applications have been reviewed, with more than 800 patients having been enrolled in a 1-week evaluation. Approximately 25% of applicants have received some degree of clinical, molecular or biochemical diagnosis. However, many of the patients have yet to receive a diagnosis, according to the press release.
“Although undiagnosed conditions present an array of challenges for clinicians, once identified, they may lead to treatments for individual patients. They also may lead to new, generalizable medical insights. The UDN Gateway will provide patients and their families access to the nation’s leading diagnostic teams and sophisticated diagnostic tools,” James M. Anderson, MD, PhD, director of NIH’s Division of Program Coordination, Planning and Strategic Initiatives, said in the release.