For Immediate Release                          Contact: Dorothy Coyle  773-332-6201

Helping Investigators Understand Patient Profile, Progression, Treatments

CHICAGO, May 30, 2019 –
The Pulmonary Fibrosis Foundation (PFF) today announced that abstracts using data from the PFF Patient Registry were presented at the American Thoracic Society International Conference (ATS) 2019 last week in Dallas. Research generated from the Registry examined racial and age differences of patients with pulmonary fibrosis, potential new clinical phenotypes, cough as a predictor of disease severity, and the effects of anticoagulation therapy on survival in interstitial lung disease. 

The PFF Patient Registry, initiated in 2016, is now a significant resource designed to promote research and accelerate the treatments for pulmonary fibrosis. Registry statistics are providing scientists with a better understanding of the PF patient profile, disease progression, and effectiveness of therapies. 

To date, 23 studies, including abstracts and manuscripts, have been developed or are underway using PFF Registry data. Collectively, this represents $30 million in disease research. 

Studies presented at ATS were developed in conjunction with investigators at leading medical centers in the PFF Care Center Network (CCN). More than 2,000 patients are enrolled in the Registry through 42 CCN sites nationwide.

“The PFF Patient Registry is an incredibly powerful research tool,” said Dr. Kevin Flaherty, Chairman of the PFF Care Center Network and PFF Patient Registry Steering Committee. “Using Registry data, biosamples and images, scientists can benchmark care and draw conclusions about how pulmonary fibrosis affects individuals.”

Abstracts presented using data from the PFF Patient Registry are available at the links below. 

Poster #12425:  Clinical Phenotypes Using Cluster Analyses Predicts Homogeneous Outcomes in the Pulmonary Fibrosis Foundation Registry
A.O. Adegunsoye, E. Freheit, M.E. Strek
Summary: Investigators uncovered four potential subgroups of pulmonary fibrosis patients using demographic, clinical, serologic and pulmonary function data. These distinct clinical phenotypes could lead to more targeted therapies. 

Oral presentation #8765: Racial Differences in Age at Diagnosis and Mortality in the Pulmonary Fibrosis Foundation Registry
A.O. Adegunsoye, J. Moore, E. Green, M.E. Strek
Summary: Scientists found that African-Americans were diagnosed with pulmonary fibrosis a decade earlier than European-Americans but there were no differences in terms of mortality and transplant-free survival. 

Poster #P1073: Patient Factors and Disease Severity Impact Cough-Specific Quality of Life in Patients with Interstitial Lung Disease
J. Lee, M.B. Scholand, J. Moore, E. Green, M.E. Strek, A. Podolanczuk, N. Patel
Summary: Investigators found a strong association between physiological impairment and worse cough-specific quality of life. They concluded that cough may be an important prognosticator of pulmonary fibrosis severity.

Oral presentation: Effects of Anticoagulation on Survival in Interstitial Lung Disease: An Analysis of  the Pulmonary Fibrosis Foundation Registry.
C..S. King, E. Freiheit, A.W. Brown, O.A. Shlobin, D Venuto, S.D. Nathan
Summary: Investigators found that patients who need anticoagulants (disorders of the coagulation system are common in pulmonary fibrosis) were associated with an increased risk for death or lung transplant. They also found that use of the anticoagulant warfarin was associated with a higher risk of death than use of direct oral anticoagulants in patients with ILD. After adjustment for various covariates, patients on warfarin still had an increased risk for mortality while those on direct oral anticoagulants did not.

About Pulmonary Fibrosis
Pulmonary fibrosis is a group of lung diseases that causes scarring in the lungs, which limits the oxygen intake necessary for the brain, heart, and other organs to function. PF affects 200,000 Americans and 50,000 new cases are diagnosed each year. There is no known cure.

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 three-star rating  from Charity Navigator and is a Better Business Bureau accredited charity. For more information, visit or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside of the U.S.