CHICAGO, May 20, 2024 – Achieving a significant milestone, the Pulmonary Fibrosis Foundation (PFF) Community Registry has reached 2,000 participants and counting, providing researchers with important data on pulmonary fibrosis (PF) and interstitial lung disease (ILD) from patients, lung-transplant recipients, caregivers and family members of those with PF. The PFF Community Registry was launched in July 2022 with the goal of driving more research and discoveries to better diagnose, treat, and eventually cure PF, and currently includes participants from all 50 States. The PFF Community Registry allows those affected by PF to work together in this quest for a cure.  

PF is a progressive, debilitating disease that causes scarring in the lungs and is part of a larger group of more than 200 ILDs, which are characterized by inflammation and/or scarring in the lungs. PF and ILDs impact over 250,000 Americans, and there are approximately 50,000 individuals who are newly diagnosed each year. There currently is no cure for PF and ILD and both are on the rise nationally.

“Reaching the 2,000-participant landmark is very exciting for researchers, and indicative of the passion of those in the entire PF community,” said Kevin Flaherty, MD, MS, Chair of the PFF Registry Steering Committee. “Thanks to all those who have joined the Community Registry, we are gathering essential data that will help us not only understand the impact of these diseases but will also help us develop better therapies.” 

Surpassing the 2,000-participant milestone during Registry Recruitment Week in April, the PFF remains steadfast in encouraging all eligible participants to share their unique experiences with researchers.

“What I would want researchers to know about my story is that I was suffering with the disease for several years before I was finally diagnosed in 2011,” remarked Alejandro Puebla, lung-transplant recipient and Community Registry participant. “I want people who are diagnosed with PF to have access to better treatments so they can live long and prosperous lives.”

The first of its kind to include caregiver and family member data, the Community Registry values diverse perspectives on the impact of PF across families to drive crucial PF research for present and future generations.

“As a young researcher, I deeply appreciate the participation of patients and their families,” said John Kim, MD, MS, Columbia University. “With no limit on enrollment, every new participant in this Registry will provide deeper insights that can help answer the many urgent questions that still remain about PF and ILD.”

The PFF Community Registry is one arm of the PFF Registry, complementing the PFF Patient Registry, which features physician-reported clinical data about patients. Combined, the two arms of the PFF Registry provide a wealth of data that is available for use by academic and industry experts. Together, the Community and Patient Registries serve as resources to stimulate research and assist in clinical trial recruitment. For questions about submitting a study proposal, email registry@pulmonaryfibrosis.org.

To learn more about the Registry or to get involved, please visit PFFRegistry.org.

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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 a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program® and has earned the Guidestar Platinum Seal of Transparency. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733)