1,000TH PATIENT REGISTERS IN NATIONAL DATABASE TO BE USED IN FIGHT AGAINST DEADLY LUNG DISEASE
FOR IMMEDIATE RELEASE
Contact: Dorothy Coyle
773-332-6201
Pulmonary Fibrosis Foundation’s Patient Registry
Reaches Fifty Percent of Enrollment Target
Chicago, May 17, 2017 – One thousand patients living with pulmonary fibrosis (PF), a progressive and deadly lung disease, have enrolled in the Pulmonary Fibrosis Foundation’s (PFF) Patient Registry, a ground-breaking study tracking data from PF patients across the country.
Data from the Registry will provide researchers with a better understanding of the PF patient profile, disease progression and effectiveness of treatments. Patient participation is on track to achieve the Registry’s enrollment goal of 2,000 patients by the end of this year. Genentech, a member of the Roche Group, is the Registry’s founding partner.
“There are great advances being made in the treatment of multiple types of fibrotic lung disease,” said Kevin Flaherty, M.D., M.S., Steering Committee Chair of the PFF Care Center Network and the PFF Patient Registry. “The Patient Registry will serve as a powerful tool in fully understanding how to diagnose, treat and eventually cure pulmonary fibrosis.”
The Registry is operated through the PFF’s Care Center Network (CCN), a network of over 40 medical centers throughout the country that use a multidisciplinary approach to deliver comprehensive care to people living with PF. Using CCN sites to collect data ensures standard procedures and controls for maximum data integrity, while allowing patients to enroll as they receive care. Anonymized patient information includes demographics, details on the diagnosis and how it was made, 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 for use in future research. When combined with the information in the Registry, these samples have the potential to help researchers better understand the pathobiology of PF, identify whether treatments are working, improve the ways doctors monitor the progression of the disease and help discover new treatments.
“The strong enrollment in the Registry reflects the unwavering commitment of patients with pulmonary fibrosis to fight this disease and advance the science,” said Benjamin Kramer, M.D., vice president, Immunology and Ophthalmology, U.S. Medical Affairs at Genentech. “We are proud to support this incredibly important initiative to further research and impact the lives of people in the pulmonary fibrosis community.”
In addition to Genentech, the first phase of the PFF Patient Registry is funded through the support of visionary partner Boehringer Ingelheim, The Cowlin Family Fund at the Chicago Community Trust, the Rattner Family Foundation, the McQuaid Family Foundation, InterMune, Biogen and the Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust, in memory of Stephen N. Dirks. Each of these donors shares in the belief that a comprehensive registry is fundamentally important to improving the lives of those affected by the disease. The PFF is seeking additional funding sources to expand the Registry to 6,000 patients by 2020.
To support the empowerment of the PF community and the investment in research for better treatments and a cure, please donate now. For more information, call 844.TalkPFF (844.825.5733) or email pcc@pulmonaryfibrosis.org.
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 312.587.9272 from outside of the US.