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NIH And Six Universities Set To Tackle Undiagnosed Rare Diseases

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NIH partners with leading US academic medical centres to tack rare and undiagnosed  diseases

The US National Institute of Health (NIH) has chosen six academic institutions across the states to tackle difficult-to-solve medical cases, and to develop new ways to diagnose rare genetic disorders.

Together with the NIH, these institutions will form the ‘NIH Undiagnosed Diseases Network’. With access to a $43 million common fund from the NIH, the network will be coordinated from Harvard University.

The centers selected to participate include Harvard University’s teaching hospitals: Boston Children’s, Brigham and Women’s and Massachusetts General; Duke University in Durham, North Carolina; Baylor College of Medicine, Houston; Stanford University in Stanford, California; University of California, Los Angeles (UCLA); and Vanderbilt University Medical Center in Nashville.

The research produced as part of the network will focus on ultra rare diseases, with as few as 50 patients worldwide. Much of the research from the different centres will look at innovation, improvements and efficacy of genomic testing for ultra rare and undiagnosed diseases.

But the research will not end there. As should be expected when dealing with rare disease patients, the network will also follow the effects of genomic testing and genetic counselling on both patients and families in an attempt to understand the treatment implications of improved diagnostics.

The NIH hopes that b 2017 each site will be seeing around 50 patients a year. This should add substantially to the NIH’s capacity to see patients with undiagnosed diseases seeking genetic diagnostics. Until now, out of 10,000 application, the NIH has only been able to accommodate 750 patients.

See the NBC’s take on the story here.

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