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, MD, 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, MD, 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.
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.
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.
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 at Duke University will host and maintain and oversee implementation of the PFF Patient Registry.
Patients needing treatment for pulmonary fibrosis should contact Perez at University of Louisville Physicians, 502-813-6500. For more information about the PFF, visit www.pulmonaryfibrosis.org.
