Pulmonary Fibrosis Foundation’s latest registry offers research opportunities

The Pulmonary Fibrosis Foundation (PFF) has launched the PFF Community Registry to facilitate research on pulmonary fibrosis (PF) and interstitial lung disease (ILD).

The PFF Community Registry collects self-reported data from patients, nonprofessional caregivers and family members via an online portal. Participation is voluntary.

“There’s a research opportunity to see if there are any differences in how patients perceive their diagnosis and care relative to how physicians input that data within the medical chart,” PFF Registry VP Junelle Speller said.

The Pulmonary Fibrosis Foundation is enrolling individuals in the Community Registry, including lung transplant recipients and patients diagnosed with pulmonary fibrosis or interstitial lung disease, Speller said. The lung transplant group is a new cohort for the organization.

The organization plans on conducting follow-up surveys at six-month intervals. “We will check in on …

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Why pulmonary fibrosis deserves more attention

Idiopathic pulmonary fibrosis x-ray courtesy of Wikimedia Commons.

This September is the inaugural Pulmonary Fibrosis Awareness Month, which the Pulmonary Fibrosis Foundation and allies have launched to educate the public about the disease family. Involving scarring of the lungs, pulmonary fibrosis gradually robs the breath from patients it affects. 

Some 200,000 Americans live with idiopathic pulmonary fibrosis.  

At present, two drugs are available to treat the condition in the U.S., but pulmonary fibrosis remains an active focus area for drug developers.

Given that September is Pulmonary Fibrosis Awareness Month, the anniversary of the September 11 attacks also can serve as a reminder of the impact of interstitial lung disease. “Lots of lung disease has occurred in the first responders of the World Trade Center,” said Dr. Joyce Lee, a senior medical advisor for the Pulmonary Fibrosis Foundat…

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