| CHICAGO, July 1
CHICAGO, July 1 The U.S. government's leading
health research agency said on Tuesday it has selected six U.S.
academic medical centers to help discover the cause of
undiagnosed diseases using advanced diagnostic tools, including
The National Institutes of Health (NIH) said the six centers
will expand the work of a pilot program at the NIH Clinical
Center in Bethesda, Maryland, that for the past six years has
evaluated hundreds of patients and provided many diagnoses,
often using genomic approaches, for rare conditions.
Together, the centers will form the NIH Undiagnosed Diseases
Network, funded by a four-year, $43 million grant from the NIH
Dr Eric Green, director of the National Human Genome
Research Institute, part of the NIH, said in a telephone
briefing the sites will focus on "very rare" diseases, those
which in some cases affect only 50 people in the world.
The academic centers selected to participate include Baylor
College of Medicine, Houston; Harvard University's three
teaching hospitals: Boston Children's, Brigham and Women's and
Massachusetts General; Duke University in Durham, North
Carolina; Stanford University in Stanford, California;
University of California, Los Angeles; and Vanderbilt University
Medical Center in Nashville.
Green said the centers will use newly developed methods for
genome sequencing, along with clinical evaluations, to decipher
the causes of rare, undiagnosed conditions.
Undiagnosed diseases are conditions that even skilled
physicians cannot diagnose despite extensive testing. Although
each disease is considered rare, as many as 30 million Americans
have a rare disease, which collectively affects about 1 in 10
Insurance coverage of genomic testing to discover the cause
of rare disease has become a growing issue at some academic
medical centers, including Baylor, that have been using the
technology to help doctors diagnose rare disease.
The NIH said that while each site may have different
approaches for handling health insurance coverage, no patient
will be turned away from participating based on lack of
Researchers in the program will share genomic data from the
patients enrolled in the centers in multiple public databases,
expanding the knowledge of genes that can cause rare disease,
which insurance companies have cited as a barrier to coverage.
Harvard University will serve as the coordinating site for
(Reporting by Julie Steenhuysen; editing by Andrew Hay)