"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, M.D., chief medical officer for the foundation. Cosgrove is associate professor of medicine in the Pulmonary, Critical Care and Sleep Medicine at National Jewish Health and the University of Colorado-Denver.
Shelia Violette, senior director research at Biogen Idec, said, "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 PF. 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 PF 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 PF everywhere," said Kevin R. Flaherty, M.D., MS, Steering Committee chairman for the PFF Care Center Network and the PFF Patient Registry.
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 PF, develop effective clinical care patterns and treatments and facilitate enrollment in clinical trials.
