National Network of Leading Academic Medical Centers and National Database of Patient Information Will Spread Knowledge, Improve Care, Improve Clinical Research, and Promote Discovery
CHICAGO, Dec. 10, 2013 /PRNewswire-USNewswire/ -- At the biennial PFF Summit the Pulmonary Fibrosis Foundation (PFF) announced its plans to establish the PFF Care Center Network (CCN) and the PFF Patient Registry. These initiatives will improve the health and quality of life of patients suffering from pulmonary fibrosis (PF) and will help provide critical insights enabling the medical research community to develop more effective therapies.
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, or IPF. IPF affects approximately 132,000 to 200,000 individuals in the United States, and approximately 38,000 individuals in the European Union. In the US the annual mortality is estimated to be 40,000 with an average survival of only 2–3 years from the time of diagnosis. There is no cure for IPF, and there is no FDA-approved treatment for IPF in the US.
"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 Chairman of the Board at the PFF. "The PFF Care Center Network and Patient Registry will provide these critical cornerstones for improved patient care and progress towards a cure."
"Patients and caregivers in the PF community have been calling for the establishment of a Care Center Network and a Patient Registry for several years," Dr. Rose added. "As the leading advocate for the PF community, we are delighted to announce our plans to move forward with these initiatives. By bringing patients together with physician researchers at some of the leading academic medical centers, and with the commitment from our dedicated sponsors, we can accelerate progress towards our shared objectives of fostering research, improving care, and providing hope."
The pilot sites for the Care Center Network and Patient Registry include:
- University of California, San Francisco,
- University of Chicago,
- University of Louisville,
- University of Michigan,
- National Jewish Health,
- University of Pittsburgh,
- Vanderbilt University,
- University of Washington, and
- Yale University.
These sites were selected because of their demonstrated commitment to PF patient care and research, and their willingness to collaborate in the creation of the PFF Care Center Network. The centers were closely involved with the two-year planning process to establish the scope, standards, and protocols for the project.
The Duke Clinical Research Institute (DCRI) has been chosen as the PFF Patient Registry's data coordinating center (DCC). The DCRI has wide-ranging experience in managing patient registries and has extensive knowledge of IPF.
The Pulmonary Fibrosis Foundation Care Center Network
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.
"For years the IPF Community has discussed the need for a collaborative registry of clinical and biological data to improve our understanding of the disease and catalyze clinical research efforts. I am extremely grateful to the PFF for their monumental efforts in making this registry a reality," said Dr. Hal Collard, Director of the Interstitial Lung Disease Program at University of California, San Francisco.
The Pulmonary Fibrosis Foundation Patient Registry
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.
"We are proud to be a central part of such an important initiative," said DCRI Director Eric Peterson, MD, MPH. "The PFF Patient Registry extends the DCRI's commitment to PF research. We are pleased to be part of a national effort to collect data that is often critical for developing more effective treatments for PF."
Perhaps most importantly, PF patients and caregivers welcome the establishment of the PFF CCN and PFF Patient Registry.
"My hopes are to find a cure and to get the word out about our disease. I know we are trying our darndest to do that," said Susan Liegeois of Milwaukee, Wisconsin, who was diagnosed with pulmonary fibrosis nine years ago. "We need to be able to better diagnose this disease and we need a cure. I welcome the beginning of the PFF Care Center Network and the Patient Registry because for me and my fellow patients, the time for action is now."
Dr. Jesse Roman, Chairman of the Department of Medicine at the University of Louisville remarked about the importance for the PFF CNN and Patient Registry: "The creation of the registry is a great step forward by the PFF. The benefits to my patients are they can contribute to the endeavor and partner with us in identifying new area for intervention. In short, they become an integral part of their care—they truly are the essence of the network."
"The PFF Care Center Network and Patient Registry are made possible by our dedicated and passionate supporters and sponsors," said Patti Tuomey, the PFF's President and COO. "On behalf of PF community, we thank them for supporting our vision."
"InterMune is delighted to be a founding supporter of the PFF CCN and Patient Registry," said Dan Welch, Chairman, Chief Executive Officer and President of InterMune. "For more than a decade, we've dedicated our efforts to improving our understanding of idiopathic pulmonary fibrosis—the most prevalent form of pulmonary fibrosis. By partnering with the PFF on this important initiative, we are working towards our shared vision of ultimately changing the course of this challenging and deadly disease. The leadership and participation of some of the top academic medical centers, the PFF and all of the corporate sponsors will help establish the critical infrastructure that will fuel progress in the research and development of new and improved therapies for pulmonary fibrosis."
Additional major supporters of the PFF CCN and PFF Patient Registry are: the Cowlin Family Fund of the Chicago Community Trust, Charles and Monica McQuaid, and the Phyllis Dirks Demont Trust.
For more information, please visit www.pulmonaryfibrosis.org or call 888.733.6741.
About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don't receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis, or IPF. IPF affects approximately 132,000 to 200,000 individuals in the United States (US), and 38,000 individuals in the European Union (EU). The annual mortality is estimated to be 40,000 in the US alone, with an average survival of 2–3 years following diagnosis. There is no cure for IPF. There is no FDA-approved treatment for IPF in the US and limited therapeutic options available for individuals with mild-to-moderate IPF in the EU, Canada, and Asia.
About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. PFF hosted its first international scientific conference, IPF Summit 2011: December 1-3, 2011 in Chicago, Illinois. The second international scientific conference From Bench to Bedside, PFF Summit 2013 was held December 5–7, 2013, in La Jolla, California. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741.
Associate Vice President, Marketing and Communications
Pulmonary Fibrosis Foundation
SOURCE The Pulmonary Fibrosis Foundation