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9 Aug 2019

Patient registry breathes new life into pulmonary fibrosis research

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August 9, 2019 Category: Health Posted by:


Over 200,000 people in the United States are living with pulmonary fibrosis (PF), a progressive, debilitating lung disease. More than 50,000 new cases of PF are diagnosed each year — with many more that are likely misdiagnosed or undiagnosed. Most cases are idiopathic pulmonary fibrosis (IPF), meaning of unknown cause. And sadly, today the disease has no known cure.

However, the Pulmonary Fibrosis Foundation (PFF) is aggressively working to solve the mysteries of PF. The new PFF Patient Registry is now linking PF patients nationally to provide researchers with instantly accessible data, and there is new hope on the horizon.

What is pulmonary fibrosis?

PF causes progressive scarring in the lungs that destroys the normal lung, making it hard for oxygen to get into the bloodstream. Common symptoms include a persistent dry cough, shortness of breath and feeling run-down. People with certain autoimmune diseases, a family history of interstitial lung disease and environmental exposures may develop PF. Risk factors for IPF include a history of smoking and an age of 60 years or more. To facilitate a clear diagnosis, physicians must perform a thorough physical exam, as well as further testing such as a pulmonary function test and/or high-resolution CT (HRCT) scans.

Recognizing the symptoms and risk factors are important to ensure an early diagnosis to maximize treatment options.

“An overall lack of awareness of PF means that research has been fairly limited, but we’re working to change that, by directly funding research, promoting advocacy efforts, encouraging collaborative relations between industry and academic researchers, and developing solutions to bridge existing gaps in PF research,” said Dr. Gregory P. Cosgrove, chief medical officer of the PFF. “Because this is still a little-known disease, many patients have never even heard of it until their diagnosis, but we are very encouraged by the research in progress with the registry data and we will continue to push for more.”

Leading research with a patient registry

In 2016, the Pulmonary Fibrosis Foundation introduced its PFF Patient Registry to drive PF research to better understand the causes, improve treatments and speed the path to clinical trials by creating a pool of patients who choose to participate. More than 2,000 people living with PF have shared their detailed medical information with the registry, and scientists are using that data in their quest for a cure.

The registry contains information about each person’s diagnosis, symptoms, medical test results, medications used to treat PF and information about how people are doing years after enrolling. It also includes HRCT scans and a central biorepository with blood samples from patients, enabling researchers to examine the relationship between biomarkers and clinical data over time. The information is always de-identified, which means that researchers who use it can never learn whose medical data it is.

More than 23 studies have already been conducted or are underway.

“PF clinicians, scientific leaders and the patient community asked for a better patient resource to support research efforts, and the Patient Registry is already delivering results beyond our expectations,” said William T. Schmidt, president and CEO of the PFF. “Interest in the data has been very strong and we look forward to future results, which we hope will lead to faster diagnosis, better treatments and, eventually, a cure.”

To learn more, visit

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