Foundation research

Pulmonary Fibrosis Foundation research explores quality and access to patient care

Newswise – (CHICAGO) May 16, 2022 – The Pulmonary Fibrosis Foundation (PFF)the leading national pulmonary fibrosis research education and advocacy organization, announced research findings from four studies examining access to care and outcomes for patients with pulmonary fibrosis (PF) and lung disease interstitial (PPI).

“Research is a top priority for the PFF, and we are thrilled that investigators and providers are using the PFF registry and other resources to shed light on the many complex and debilitating presentations of FP,” said William T. Schmidt, President and CEO. of the FPF.

The research – which investigated urban and rural differences between patients, hospitalization rates by type of LTD, access to palliative care services and patient outcomes across the network of care centers PFF – will be presented at the 2022 American Thoracic Society International Conference (ATS), May 13-18, in San Francisco.

Four of the studies used data from PFF Patient Registryan observational database created in 2016 that tracks more than 2,000 patients with PID at PFF Care Center Network (CCN) sites.

Studies include —

Poster #11457: Differences in patient outcomes across the PFF network of care centers

  • JS Lee, R. Boente, E. White, C. Baxter, JE Shore, HR Collard
  • B22 Poster Discussion Session – Emerging Management of Fibrotic PID
  • Monday, May 16, 9:30-11 a.m.
  • Summary: Using data from the PFF patient registry, this study suggests that there is site-level variation in key clinical outcomes for patients with PID cared for at PFF CCN sites. This research supports further investigation to identify practice models and resources that are associated with better patient outcomes.

Poster #8147: Hospitalization Rates for Various Interstitial Lung Diseases: An Analysis of the Pulmonary Fibrosis Foundation (PFF) Patient Registry

  • CS King, RV Ignacio, E. Freiheit, S. Arya, V. Khangoora, AL Singhal, A. Nyquist, A. Brown, OA Shlobin, KR Flaherty, SD Nathan
  • Mini Symposium B94 – Learning from registries and clinical trials in LTD
  • Monday May 16, 2:15-3:45 p.m.
  • Summary: The researchers analyzed hospitalization rates among patients from the PFF Patient Registry and found that the rates were similar between PID subtypes. The need for hospitalization was associated with an increased risk of death or transplantation in the entire cohort. The risk of death or transplantation was highest after hospitalization in idiopathic pulmonary fibrosis (IPF) and lowest in non-IPF idiopathic interstitial pneumonia.

Poster #8487: CT-derived visual and quantitative parameters predict graft-free survival in patients with interstitial lung disease: results from the Pulmonary Fibrosis Foundation Registry

  • AS Oh, DA Lynch, KR Flaherty, SM Humphries, Pulmonary Fibrosis Foundation
  • Mini Symposium B94 – Learning from Registries and Clinical Trials for PID Registrar Investigators
  • Monday May 16, 3:05-3:15 p.m.
  • Summary: Using published diagnostic criteria for usual interstitial pneumonia (PUI) in a population of people with clinically diagnosed PID in the PFF registry, researchers explored the relationship between CT pattern, extent of fibrosis and graft-free survival. A defined UIP pattern and extent of fibrosis noted by data-based textural analysis (DTA) are predictors of graft-free survival in a heterogeneous group of patients diagnosed with ILD.

Poster #11428: Comparison of Interstitial Lung Disease Diagnoses in Urban and Rural Areas Among Patients in the Pulmonary Fibrosis Foundation Patient Registry

  • AE Dimmock, E. White, Y. Furuya, E. Freiheit, H. Kim
  • C50 Thematic Poster Session – Emerging EPI in Obstructive and Restrictive Lung Disease
  • Tuesday, May 17, 9:30 a.m.-3:45 p.m.
  • Summary: Using the PFF patient registry, the study team found that hypersensitivity pneumonitis and exposure-related PID were more common in patients with PIF who live in rural areas and were associated with certain types of fuel consumption. The investigators concluded that the use of charcoal and firewood may explain the different types of ILDs found in patients who live in rural areas.

the Network of PFF care centersa group of 68 medical centers nationwide that specialize in the multidisciplinary care of people living with PF, were used in the following palliative care study –

Poster #5851: Discordance between actual and perceived access to palliative care services for Pulmonary Fibrosis Foundation care centers

  • RA Gersten, B. Seth, KO Lindell, SK Danoff
  • Thematic poster session B36 – Spectrum of fibrotic interstitial lung diseases
  • Monday, May 16, 9:30 a.m. to 3:45 p.m.
  • Summary: Providers at PFF Care Center Network sites view palliative care as an important resource for their patients with pulmonary fibrosis. However, a significant discrepancy exists between provider-reported access and actual access to local outpatient and inpatient palliative care services, which can be a significant barrier to referral to palliative care for patients with fibrosis. pulmonary.

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About the Pulmonary Fibrosis Foundation

The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately to cure pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing the improvement of FP patient care and providing unparalleled support and educational resources to patients, caregivers, family members and to health care providers. The PFF has a three-star rating from Charity Navigator and is a Better Business Bureau (BBB) ​​Wise Giving Alliance accredited charity. The Foundation has met all requirements of the National Health Council® Standards of Excellence Certification Program and has earned the Guidestar Platinum Seal of Transparency. For more information, visit or call 844.TalkPFF (844.825.5733).