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THE PULMONARY FIBROSIS FOUNDATION ENROLLS 500TH SUBJECT IN NATIONAL REGISTRY FOR PULMONARY FIBROSIS PATIENTS
The PFF Patient Registry is a comprehensive research tool available in the fight against pulmonary fibrosis.
Chicago, November 30, 2016 – The Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis (PF) resource for patients, their families and the medical community announced the enrollment of its 500th subject in its national registry. The initial enrollment target is 2,000 patients, so this represents an important milestone in developing this important resource. Patient enrollment takes place at participating sites in the PFF Care Center Network (CCN), a national network of 40 sites in 27 states across the country.
Launched in 2013, the CCN is comprised of medical centers using a multidisciplinary, collaborative approach to deliver comprehensive care to people living with PF. Each CCN site also offers access to important support services for patients and their families.
The PFF Patient Registry will be a comprehensive research tool available in the fight against PF. All data entered into the Registry will come through a CCN site, ensuring standard collection procedures and controls for maximum data integrity. The de-identified information includes patient demographics, details on the diagnosis and how it was made, medical test results, medications taken and medical outcomes such as hospitalization, lung transplantation and death.
Participants may also choose to contribute blood samples to a biorepository that will store them for use in future research. When combined with the information in the Registry, these samples have the potential to help scientists find new causes of PF, identify means of determining whether treatments are working, improve the ways doctors monitor the progression of the disease and help discover new treatments.
“The Registry database is something the PF community has needed for a long time,” said Terence Hales, PFF Board of Directors Member and PF Family Member. “You hear all the stories, but now we’ll have the data collected in a standardized way for accurate and meaningful analysis. That will make recruitment for clinical trials easier, help develop effective therapies and provide researchers with valuable data.”
The PFF Patient Registry is funded through the generous support of corporations, foundations and individuals who have been impacted by PF. Each of these donors share in the belief that a comprehensive registry is fundamentally important to improving the lives of those affected by the disease.
About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which, over a period of time, lung tissue becomes thickened, stiff and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and grows thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive enough oxygen. In some cases, doctors can determine the cause of the fibrosis, but in many cases, there is no known cause. When the cause of the fibrosis is unknown (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. There is no cure for IPF. Presently, there are two FDA-approved treatments for IPF in the U.S.
About the Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity. The PFF Summit 2017, its fourth biennial international health care conference will be held from November 9-11, 2017 in Nashville, Tennessee. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or +1 312.587.9272 from outside of the US.