The PFF Registry is an unparalleled research tool that collects data from patients living with pulmonary fibrosis or interstitial lung disease, lung transplant recipients who have had PF or ILD as well as their caregivers and family members nationwide.

The PFF Registry is a nationwide research study that enables researchers, for the first time, to explore what treatment strategies work best for patients and to find new ways to prevent, diagnose, treat, and potentially cure pulmonary fibrosis.

What is a registry?

A registry collects and tracks information about the health status of patients and the care they receive. Researchers can request access to the information of the entire group of patients to evaluate contributing factors, treatment outcomes and more. A registry also collects information from caregivers, family members, and others who contribute to the care and outcomes of patients. 

 

Unlike a clinical trial where subjects must follow a specific treatment protocol, in a registry, data is captured on a subject's ongoing care. A registry does not prescribe what should be done or require additional medications or visits. It simply captures real-world data to help researchers learn about actual care patterns, observe subjects, and measure and improve quality of care.

 

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 2,000 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.

How Do I Enroll?

Participating in the PFF Community Registry is easy, private, and secure. Follow the video tutorial below for step-by-step instructions.


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 or interstitial lung disease, which can be a progressive, debilitating disease that has no cure. The PFF Registry invites patients, PF patients who have received a lung transplant, caregivers, and family members to participate in the Community 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

Boehringer Ingelheim

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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. Review our privacy policy.

PFF Registry News

View the latest news and updates about the PFF Registry.

Contact Us

For information about the PFF Registry, contact registry@pulmonaryfibrosis.org.


PFF Registry

Patient Powered. Data Driven. Research Results.