The Pulmonary Fibrosis Foundation Receives Grant from Biogen Idec to Support the PFF Patient Registry

Jun 10, 2014, 10:27 AM


Michelle Michael
Vice President, Marketing and Communications


CHICAGO, June 10, 2014/PR Newswire/-- The Pulmonary Fibrosis Foundation (PFF) today announced a key partnership with Biogen Idec in support of the PFF Patient Registry. The PFF announced its plan to establish a PFF Patient Registry, along with a PFF Care Center Network (CCN), at its biennial PFF Summit held in December 2013.  

“Our partnership with Biogen Idec will further enhance the PFF Patient Registry, allowing us to investigate fundamentally important questions in pursuit of our mission to improve the lives of patients with pulmonary fibrosis and one day identify a cure,” said Gregory P. Cosgrove, MD, Chief Medical Officer for the Foundation. Dr. Cosgrove is Associate Professor of Medicine in the Division of Pulmonary, Critical Care, and Sleep Medicine at National Jewish Health and the University of Colorado-Denver in Denver, CO.

“We share in the Pulmonary Fibrosis Foundation’s goal to advance the scientific understanding of this complex disease, and are proud to partner with them on this important initiative,” said Theresa Podrebarac, VP Global Immunologic Disease Clinical Development at Biogen Idec.

Shelia Violette, Senior Director Research at Biogen Idec, adds: “The more we learn about rare diseases like pulmonary fibrosis, the more we improve the chances of discovering and developing therapies that can make a truly meaningful difference in patients’ lives.”

Once established, the PFF Patient Registry will become the largest collection of pulmonary fibrosis (PF) patient data in the world. With additional resources, the Registry will be able to collect more in-depth data as well as biologic and radiographic samples from those living with pulmonary fibrosis. This data will be made available to qualified investigators who are looking to gain a better understanding of the disease, make new observations about who gets pulmonary fibrosis and why, and develop more effective treatments.

“The dissemination of findings from the Registry though publications, educational programs, and the CCN extends the value of the Registry well beyond the pilot sites, with a primary goal of improving the overall care of patients with pulmonary fibrosis everywhere,” said Kevin R. Flaherty, MD, MS, Steering Committee Chairman for the PFF Care Center Network and the PFF Patient Registry. Dr. Flaherty is a Professor Medicine in the Division of Pulmonary and Critical Care Medicine at the University of Michigan Health System in Ann Arbor, Michigan.

Importantly, because these data will be collected in a standardized way at all sites, accurate and meaningful results will be obtained each time the data are analyzed. The value of the Registry will be recognized as investigators at and beyond the pilot sites utilize the data and samples to learn more about the biological mechanisms of pulmonary fibrosis, develop effective clinical care patterns and treatments, and facilitate enrollment in clinical trials.

The partnership between the Pulmonary Fibrosis Foundation and Biogen Idec strengthens the Registry initiative, driving pulmonary fibrosis research forward. It will increase the overall utility and value of the Registry and ultimately benefit all those living with and affected by pulmonary fibrosis.

About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to serve as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, and funding research. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. PFF Summit 2015: From Bench to Bedside, the PFF’s third biennial international health care conference, will be held November 12-14, 2015. For more information visit or call 888.733.6741 or +1 312.587.9272 from outside of the US.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which over a period of time 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 between 132,000-200,000 people in the United States (US), and between 37,000-40,000 people in the European Union (EU). The annual mortality is estimated to be 40,000 in the US, with an average survival of 2–3 years following diagnosis. There is no cure for IPF. There is presently 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.

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