PFF tabs U of L for new patient registry

Louisville named as one of nine centers for new initiative aimed at aiding pulmonary fibrosis research and treatment.
PFF tabs U of L for new patient registry

The Pulmonary Fibrosis Foundation selected the University of Louisville as one of nine pilot centers for its new PFF Patient Registry.

The Pulmonary Fibrosis Foundation (PFF) in late December announced its plans to establish the PFF Care Center Network (CCN) and the PFF Patient Registry at nine pilot sites, including at the University of Louisville.

Aimed at improving the health and quality of life of patients suffering from pulmonary fibrosis (PF), these initiatives will help provide critical insights enabling the medical research community to develop more effective therapies.

Sites were selected because of their demonstrated commitment to pulmonary fibrosis patient care and research, and their willingness to collaborate in the creation of the PFF Care Center Network.

Besides U of L, those sites include 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.

Dr. Rafael Perez, director of the U of L Interstitial Lung Disease (ILD) program in the Division of Pulmonary, Critical Care & Sleep Disorders Medicine will lead the University of Louisville site.

The ILD program will bring its multidisciplinary core of experts in lung pathology and radiology, pulmonary hypertension, rheumatology, lung transplantation, and research coordinators into the PFF Care Center Network.

Additionally to furthering the mission of outstanding care to individuals with interstitial lung disease, the U of L site will contribute detailed information about interstitial lung diseases through an anonymous patient registry.

"The creation of the registry is a great step forward by the PFF," Dr. Jesse Roman, Chairman of the University of Louisville Department of Medicine said. "The benefits to my 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 132,000 to 200,000 individuals in the United States, pulmonary fibrosis is a condition in which the lung tissue becomes thickened, stiff, and scarred. In most cases, there is no known cause and the disease is called idiopathic pulmonary fibrosis (IPF). There is no cure for IPF, and there is no FDA-approved treatment for IPF in the U.S.

"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," Daniel M. Rose, M.D., CEO and Chairman of the Board at the PFF said. "The PFF Care Center Network and Patient Registry will provide these critical cornerstones for improved patient care and progress towards a cure."

The PFF Care Center Network will provide 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 incrementally expand to eventually include 40 medical centers by 2015.

Meanwhile, the PFF Patient Registry will eventually 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.

All the pilot sites of the Care Center Network will participate in the Patient Registry. A principal investigator at each Network site will work with a team of allied health professionals to enroll PF patients into the Registry. The Duke Clinical Research Institute will host and maintain the PFF Patient Registry, and they will oversee the implementation of the Registry.

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