Funding is winding down for a highly regarded NIH program called the Undiagnosed Diseases Network—and some, including patient advocates, are scrambling to persuade Congress to restore full funding or keep at least parts of it afloat.
Ten years ago, an athletic 12-year-old from Affton, Missouri, named Mitchell Herndon began to experience muscle weakness that eventually led to him using a wheelchair. After years of visits to specialists failed to diagnose his neurological symptoms, he enrolled in a National Institutes of Health -funded program that studies patients with debilitating mystery diseases.
The UDN supports teams of clinicians, geneticists, and other experts who study patients with medical cases that have confounded their doctors and specialists. It was designed to sunset 10 years after being established in 2013, and a new NIH program to carry on its work will get less than one-third as much as its current funding. With their NIH support ending in a year, seven of the network’s 12 clinical sites are turning away new patients and focusing on current cases.
The UDN emerged from an effort launched in 2008 by the NIH Clinical Center in Bethesda, Maryland, to study people with puzzling symptoms using exhaustive clinical workups exome sequencing, a then-new tool that scours a person’s protein-coding DNA for a culprit gene. The program’s success led NIH’s Common Fund, dedicated to new programs, to launch a national network that grew to include the NIH intramural program and 11 medical centers around the country.
The new NINDS coordinating center will fund small research grants, but scientists say this won’t be enough to compensate for the network’s existing research resources. Those include model organism screening centers, a metabolomics center, and research at the clinical sites such as RNA sequencing. Without these research components, the UDN will be “less robust,” says clinical geneticist Vandana Shashi, who heads Duke University’s UDN site.
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