The University of Louisville is one of nine pilot sites selected by the Pulmonary Fibrosis Foundation (PFF) for its newly established Care Center Network and the PFF Patient Registry program. Rafael Perez, M.D., director of the UofL Interstitial Lung Disease (ILD) program in the Division of Pulmonary, Critical Care & Sleep Disorders Medicine, will lead the UofL site.
Aimed at improving the health and quality of life of patients suffering from pulmonary fibrosis, the network and registry will help provide critical insights enabling the medical research community to develop more effective therapies, say UofL physicians involved in the initiative.
Sites were selected because of their expertise in pulmonary fibrosis patient care and research. In the network with UofL are the University of California, San Francisco, University of Chicago, University of Michigan, National Jewish Health, University of Pittsburgh, Vanderbilt University, University of Washington and Yale University.
"The creation of the registry is a great step forward by the PFF," said Jesse Roman, M.D., chair of UofL's Department of Medicine. "The benefits to patients are that they can contribute to the endeavor and partner with us in identifying new areas for intervention. In short, they become an integral part of their care—they truly are the essence of the network."
Affecting up to 200,000 people in the United States, pulmonary fibrosis is a condition in which lung tissue becomes thickened, stiff and scarred. In most cases, there is no known cause and the disease is termed idiopathic pulmonary fibrosis. The lung damage caused by pulmonary fibrosis cannot be reversed, and while there are medications that can help ease symptoms, there is no cure.
The disease is relentlessly progressive; patients almost always die within two to five years of diagnosis. Annually, 40,000 people die from pulmonary fibrosis - the same number of deaths caused by breast cancer each year.
"To make progress with this disease, we need a multidisciplinary approach by teams of expert medical professionals, we need more data, and we need to track the natural history of the disease," said Daniel M. Rose, M.D., CEO and board chair of the PFF. "The PFF Care Center Network and Patient Registry will provide these critical cornerstones for improved patient care and progress towards a cure."