The Undiagnosed Diseases Network of the NIH (U.S.): A National Extension

JAMA 

 In 2008, an Undiagnosed Diseases Program (UDP)^1,2 was established within the Intramural Research Program of the National Institutes of Health (NIH). This program evaluates patients and families for whom medicine has failed to provide a diagnosis........ The UDN is an ambitious new venture. Although leaders of the member institutions know they will succeed in some measure, despite best efforts, some patients will still not receive a diagnosis. Even then, there is value in moving families from stagnation to hope; the knowledge that a team of physicians and scientists will continue to work in the pursuit of a diagnosis can be very powerful. This reestablishes the bond with patients who live in diagnostic limbo, many of whom share the simple goal of helping others avoid the uncertain fate of the undiagnosed.