Rare Daily Staff

The National Institutes of Health said it would provide about $100 million in grants over the next four years to expand its Undiagnosed Diseases Network (UDN) to 12 clinical sites from seven today.

The UDN was launched to build on the success of the Undiagnosed Diseases Program at the NIH Clinical Center. Since opening to applications in 2015, the network has diagnosed more than 200 cases that had long been mysteries to the medical community.

The grants, part of the second phase of the UDN, are pending the availability of the funds. In addition to the new clinical sites, new research cores will be part of the second phase of the network, which will include a new Metabolomics Core at the Mayo Clinic in Rochester, Minnesota and a new Model Organisms Screening Center at Washington University in St. Louis.

“The UDN is pioneering a new personalized medicine model for helping those patients who have historically been the most difficult for the medical community to diagnose,” said James Anderson, director of NIH’s Division of Program Coordination, Planning, and Strategic Initiatives, which provides financial support and joint leadership for the network via the NIH Common Fund. “By bringing together a nationwide network of top clinicians and laboratory researchers using the most up to date medical technology and knowledge, the UDN is able to provide hope to these patients, and in many cases discover a diagnosis.”

The five new clinical sites in the second phase of the UDN include:

  • Children’s Hospital of Philadelphia and the Hospital of University of Pennsylvania
  • University of Miami School of Medicine; Principal Investigators
  • University of Utah, Salt Lake City
  • University of Washington School of Medicine, Seattle, and Seattle Children’s Hospital
  • Washington University in St. Louis

The new sites will join the existing academic clinical sites at Baylor College of Medicine, Houston; Duke University, Durham, North Carolina and Columbia University, New York City; Brigham and Women’s Hospital, Boston Children’s Hospital, and Massachusetts General Hospital at Harvard Medical School; Stanford Medicine, California; the University of California Los Angeles; Vanderbilt University Medical Center, Nashville, Tennessee; and the NIH UDP, Bethesda, Maryland.

Phase II of the UDN will also retain the coordinating center at Harvard Medical School and University of Alabama at Birmingham, the genome sequencing core at Baylor College of Medicine, and the model organism screening center at Baylor College of Medicine and the University of Oregon, Eugene.

“The success of the program so far demonstrates the importance of this research network for patients and their families, who often have long had no answers about the causes of their diseases,” said principal investigator F. Sessions Cole, who will lead the Washington University School of Medicine clinical site that is joining the Undiagnosed Diseases Network. “We are looking for patients with symptoms or problems that don’t fit into known diseases and for some indication that their conditions are inherited.”

September 25, 2018
Photo: F. Sessions Cole, who will lead the Washington University School of Medicine clinical site that is joining the Undiagnosed Diseases Network