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.
To make progress there is a need for a multidisciplinary approach by teams of expert medical professionals, more data and to track the natural history of the disease. The PFF Care Center Network and Patient Registry and the UofL Physicians – Pulmonary Fibrosis Care Center will provide these critical cornerstones for improved patient care and progress toward a cure.
The benefit of the UofL Physicians – Pulmonary Fibrosis Care Center to patients is that they can contribute to the effort and partner with us in identifying new areas for intervention, becoming an integral part of their care.
The UofL Physicians – Pulmonary Fibrosis Care Center is part of an esteemed network that includes: the University of California, San Francisco; the University of Chicago; the University of Michigan; National Jewish Health; the University of Pittsburgh; Vanderbilt University; the University of Washington; and Yale University. For more information about the Care Center Network and Patient Registry, and the Pulmonary Fibrosis Foundation, visit pulmonaryfibrosis.org.
Diseases and conditions
Affecting up to 200,000 people in the U.S., 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 and can lead to respiratory failure and death within two to five years from the time of diagnosis. Annually, 40,000 people die from pulmonary fibrosis – the same number of deaths caused by breast cancer each year.
Treatments and services
As part of the Pulmonary Fibrosis Foundation Care Center Network, the UofL Physicians – Pulmonary Fibrosis Care Center provides a standardized, multidisciplinary approach to patient care. This model of comprehensive patient care will help identify and establish best practices, determine the impact of specific interventions and improve the quality of life of patients. The Care Center Network will expand to include 40 medical centers by 2015.
The Patient Registry is planned to be the largest database of pulmonary fibrosis 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 pulmonary fibrosis. The registry will use a consistent data-gathering methodology so the information obtained will be useful to all clinicians and researchers seeking to better understand the disease and develop new therapies for pulmonary fibrosis.
The UofL Physicians – Pulmonary Fibrosis Care Center, and all the pilot sites of the Care Center Network, participate in the Patient Registry. A principal investigator will work with the team of health professionals to enroll patients in the registry. The Duke Clinical Research Institute at Duke University will host and maintain the Patient Registry and oversee its implementation.