The Registry follows thousands of participants for as long as they are able to participate. This means huge amounts of patient data are available to researchers who are eager to answer questions about PF.

Kevin R. Flaherty, MD, MS
Steering Committee Chair
PFF Registry

Knowledge is the first step in understanding how to positively impact all those living with PF. Pulmonary fibrosisis a complex group of over 200 debilitating diseases. Each case is unique and much about the disease remains unknown.

What is Pulmonary Fibrosis?

Pulmonary fibrosis (PF) is a family of more than 200 different lung diseases that all look very much alike. The PF family of lung diseases falls into an even larger group of diseases called “interstitial lung diseases.” 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.

With no known cure, certain forms of PF, such as idiopathic pulmonary fibrosis (IPF), may take the lives of patients within three to five years from diagnosis. 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. 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.

 

PF Quick Facts

people


50,000 new cases of pulmonary fibrosis are diagnosed each year.

Stiff lungs, low blood oxygen levels, and "crackles" in the lungs are signs doctors use to recognize PF.


The most common symptoms of PF are dry, hacking cough and shortness of breath.


Symptoms include shortness of breath, dry, hacking cough, fatigue and weakness, and discomfort in chest.

Some known causes include airborne contaminants, radiation treatments, some medications, and genetics.


Treatment options include supplemental oxygen, pulmonary rehab, medications, and lung transplantation.

Life with Pulmonary Fibrosis

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.

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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. To review our policy, click here.

PFF Registry News

To view the latest news and updates about the PFF Registry, click here.

Contact Us

To get in touch with the PFF, please email registry@pulmonaryfibrosis.org.

PFF Registry

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