The Registry follows thousands of participants for as long as they are able to participate. This means huge amounts of data are available to researchers who are eager to answer questions about pulmonary fibrosis (PF) and interstitial lung disease (ILD).

Kevin R. Flaherty, MD, MS
Steering Committee Chair
PFF Registry
The PFF Registry collects data from thousands of individuals impacted by pulmonary fibrosis and interstitial lung disease. The goal of the Registry is to provide data to medical researchers who are working to improve the lives of everyone affected by these diseases.

What is Pulmonary Fibrosis?

Pulmonary fibrosis (PF) is part of a larger group of more than 200 interstitial lung diseases, which are characterized by inflammation and/or scarring in the lung. The word “pulmonary” means “lung” and “fibrosis” means scar tissue. So, in its simplest sense, pulmonary fibrosis means scarring in the lungs. Pulmonary fibrosis is a progressive disease, which means it tends to worsen over time. However, every individual diagnosed with pulmonary fibrosis has a unique experience with the disease and there is no “standard” or expected clinical course.

The good news for people living with PF is that there are treatments designed to specifically manage the symptoms of the disease and researchers are studying new ways to halt its progression. Dozens of drug therapies are in development for different types of PF.

For more information on PF, visit

Why the PFF Registry Matters

Researchers are working hard to understand the genetic and lifestyle effects of PF and ILD. With your participation, we can fast forward medical research and improve the lives of patients with PF or ILD and their families, for today’s and future generations.

Data from the PFF Registry helps fuel research. A 2020 survey revealed that 86% of Americans do not know the symptoms of pulmonary fibrosis. The PFF Registry is 100% committed to raising awareness of PF and helping those living with this disease.

Donate Today

Your gift to the PFF Registry will enable us to expand patient enrollment and provide even greater access to investigators as they search for a cure for PF.


Your Privacy Matters

The Pulmonary Fibrosis Foundation Registry considers the protection of your privacy to be one of our most important responsibilities. We have set up strict protocols to protect your personal information. Review our privacy policy.

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Contact Us

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PFF Registry

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