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The PFF Registry is an unparalleled research tool that tracks clinical data, blood samples, images, and patient-reported outcomes from patients with pulmonary fibrosis nationwide.
What is a registry?
A clinical data registry records, analyzes, and reports information about a patient’s health status and care received over time in order to improve health outcomes. Unlike a clinical trial where subjects must follow a specific treatment protocol, a registry captures data from a patient’s usual health care and experience via a secure online portal.
What is the PFF Registry?
Since 2016, the PFF Patient Registry has enrolled and followed the care of thousands of patients within the PFF Care Centers. Now, the PFF Registry has expanded to capture more participants in various care settings and regions across the United States. The PFF Patient Registry will maintain enrollment of over 2000 patients. The new PFF Community Registry will provide insight into the experience of all patients living with pulmonary fibrosis or interstitial lung disease, including those who have had a lung transplant, as well as caregivers and family members. We invite you to join and help advance research on these devastating diseases.
PFF Registry Report
Learn more about the PFF Registry's advances in research in the annual PFF Registry Report.
You may also download copies of the previous PFF Registry annual reports.
2020 PFF Registry Second Annual Report
2019 PFF Registry First Annual Report
It’s about finding answers.
The PFF Registry is fostering a community of patients, caregivers, family members, health care professionals, researchers, industry partners, and others all with the same goal: finding answers for all forms of PF. Learn more.
It’s about research.
The PFF Registry offers a wealth of longitudinal data to stimulate research and assist in clinical trial recruitment on pulmonary fibrosis. Learn more.
It’s about community and helping you.
Hundreds of thousands of Americans are living with pulmonary fibrosis. The PFF Registry invites patients, PF patients who have received a lung transplant, caregivers, and family members to participate in the Registry. As more people contribute data, a clearer picture of PF will emerge to help lead us toward answers. Learn more.
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 answers to PF.
Thank You to Our Lead Sponsors
Founding Partner
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Visionary Partner
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Sustaining Partner
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For more information about our sponsors, click here.
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
Patient Powered. Data Driven. Research Results.