CHICAGO, May 18, 2026 /PRNewswire/ — The Pulmonary Fibrosis Foundation (PFF) Community Registry has surpassed 3,000 participants, marking a major milestone in the effort to accelerate research into pulmonary fibrosis (PF) and interstitial lung disease (ILD), progressive and life-threatening lung diseases affecting more than 250,000 people in the United States. With more than 2,000 patients living with pulmonary fibrosis enrolled, the Registry continues to grow as a powerful source of data that can help researchers better understand these devastating diseases and move closer to better treatments and, ultimately, a cure.
Advancing Research Through Data
Launched in 2022, the Pulmonary Fibrosis Foundation Community Registry stands as a powerful tool for researchers dedicated to developing new therapies and advancing treatments for PF and ILD. This enrollment milestone provides researchers with a substantially larger dataset, enabling more comprehensive studies and deeper insights into the progression and characteristics of these complex conditions. Each unique case and experience captured through the Registry contributes vital information, moving the scientific community closer to effective treatments and a cure.
This engaged community of participants has enabled researchers and drug developers to complete 14 additional projects, including a first-of-its-kind study focused on caregivers. Using Community Registry data, Dr. Lanier O’Hare examined the experiences of those caring for people living with pulmonary fibrosis. The study found that caregivers provide an average of six types of care and spend about 39 hours a week in that role. The median caregiver age was 63, and many caregivers were still working while balancing these responsibilities. Despite these demands, only 22% reported participating in a support group.
“We are grateful to everyone in the pulmonary fibrosis community who has joined the PFF Community Registry,” said Jessica Shore, PhD, RN, Chief Scientific Officer for the Pulmonary Fibrosis Foundation. “Every person’s experience is valuable and the more participants we have, the stronger the dataset. We are committed to growing this Registry to 6,000 enrollees by 2030.”
Strengthening the Registry’s Leadership
Further enhancing the PFF’s commitment to advancing research and the Registry program, Dr. Teja Kulkarni has joined the PFF medical team as Senior Medical Advisor for the PFF Registry. Dr. Kulkarni is Associate Professor of Pulmonology, Allergy, and Critical Care and Director of the ILD Clinic at the University of Alabama at Birmingham. She brings extensive experience in both clinical care and research, including firsthand experience using the Registry in her own studies. Her research focuses on identifying imaging and clinical biomarkers that can better predict disease progression and therapeutic response in patients with ILD. She also serves as a principal investigator or co-investigator on clinical trials evaluating new therapies for ILD.
Contributing to a Cure
The PFF Community Registry comprises a series of surveys designed for all community members affected by PF or ILD. By collecting diverse data, the Registry aims to unravel the many unknowns surrounding these diseases. Knowledge derived from these responses is the foundational step in understanding how to positively impact all individuals affected.
Eligible enrollees for the Pulmonary Fibrosis Foundation Community Registry include:
- Patients living with pulmonary fibrosis or interstitial lung disease.
- Lung transplant recipients who have had PF or ILD.
- Caregivers and biological family members of patients with PF or ILD, including those who have passed away.
This expanded participation underscores the collective commitment to accelerating research and finding a cure for pulmonary fibrosis and interstitial lung disease. For additional information or to enroll, visit pffregistry.org.
About the Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation is committed to accelerating research, empowering our community, and transforming care so that everyone with pulmonary fibrosis can live a better life. Our ultimate goal is to find a cure for pulmonary fibrosis. 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)
Contact: Dorothy Coyle, Pulmonary Fibrosis Foundation, 773-332-6201
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SOURCE The Pulmonary Fibrosis Foundation
