Dive Brief:
- The National Institutes of Health on July 1 named six clinical sites that will participate in a four-year, $43-million initiative to develop effective ways to diagnose mysterious illnesses.
- Participants in the Undiagnosed Diseases Network are: Baylor College of Medicine, Houston; Boston Children's Hospital, Brigham and Women's Hospital and Massachusetts General Hospital, Boston; Duke University, Durham, N.C.; Stanford University, Stanford, Calif.; University of California, Los Angeles; and Vanderbilt University Medical Center, Nashville.
- The six new sites, set to get four-year grants of about $7.2 million apiece, are joining a clinical site already established at NIH to pursue cutting-edge diagnoses. Last December, NIH chose Harvard Medical School as the coordinating center for the multi-institution network.
Dive Insight:
In the effort to solve medical mysteries, NIH said the clinical sites will conduct clinical evaluation and scientific investigation in cases involving patients with prolonged undiagnosed conditions. NIH said the network builds on its six-year-old program in Bethesda, Md., that has evaluated hundreds of patients and provided numerous diagnoses of rare conditions, often using genomic approaches.
According to NIH, the goal is to use the latest tools to make diagnoses that span the clinical, pathological and biochemical spectrum and uncover the basic genetic defect. Ultimately, the network has "the potential to transform medicine and serve as a catalyst for new discoveries," NIH said.
A principal investigator at one network site said there likely is "a substantial unmet demand for the diagnoses of conditions that have perplexed skillful physicians." But a doctor must apply to the network on behalf of a patient, and the number of patients accepted is expected to start out at 50 per year per site. The question is how many long-suffering people will get lucky—and even get this far.