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Expanding the NIH Undiagnosed Diseases Program

The NIH issued a Request for Information concerning expanding the NIH Undiagnosed Diseases Program (NIH-UDP) to extramural clinical sites capable of providing diagnoses to patients presenting with difficult to diagnose diseases.  According to NIH, “Since its inception in 2008, the NIH UDP has received approximately 6,300 inquiries, reviewed 2,300 medical records, and admitted 450 patients to the NIH Clinical Center for thorough, one-week evaluations.  Even without a systematic approach to advertising the program, there is a substantial unmet demand for these services– a major reason to create a national network of diagnostic sites.  Another reason is that a network may ease the travel burden for some patients seeking help from the UDP. In addition to the benefit to patients with rare diseases, the UDP creates important opportunities for research:  uncovering the biochemistry, physiology, and underlying genetic etiology leads to a better understanding of disease processes and those of related disorders.”  Responses to this RFI will be accepted through September 18, 2012.

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