LOUISVILLE, Ky. (Jan. 20, 2014) – 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, 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.
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.
The PFF Patient Registry is planned to be the largest database of PF patient records with the furthest demographic reach in the country. It will provide data essential for improving the understanding of the epidemiology, incidence, prevalence, natural history and other clinical characteristics of PF. The registry will use consistent data-gathering methodology so that the information obtained will be useful to all clinicians and researchers seeking to better understand the disease and develop new therapies for PF.
Patients needing treatment for pulmonary fibrosis should contact Perez at University of Louisville Physicians, 502-813-6500. For more information about the PFF, visit pulmonaryfibrosis.org.