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.

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.

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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 Registry has enrolled and followed the care of thousands of patients within the PFF Care Centers. Now, the PFF Registry will expand to capture more participants in various care settings and regions across the United States. The PFF Care Center Registry will maintain enrollment of over 2000 patients. The new PFF Community Registry will provide insight into the experience of all pulmonary fibrosis patients, 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 this devastating disease.

PFF Registry Reports

Learn more about the PFF Registry's advances in research in the annual PFF Registry Report. You may also read the spring 2021 and fall 2019 reports.

PFF Registry: Fall 2021 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

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. 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.