The PFF Registry is an unparalleled nationwide research study that collects data from patients living with pulmonary fibrosis (PF) or interstitial lung disease (ILD), lung transplant recipients who have had PF or ILD as well as their caregivers and family members. Together, we can fast forward medical research and improve the lives of everyone affected by PF and ILD.

Be a part of the solution.

 

 

The information we collect in our Registries helps us to contribute tangible, positive change and improvements in Research, Advocacy, Education and Practice to help us find a cure.

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What is a registry?

A registry collects and tracks information about the health status of patients and the care they receive. 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, 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.

Researchers can request access to this  information to evaluate contributing factors, treatment outcomes, and more.

What is the PFF Registry?

The PFF Registry is a nationwide research program that encapsulates two databases – the PFF Patient Registry and PFF Community Registry. Combined, the two databases provide a wealth of data on patients diagnosed with pulmonary fibrosis (PF) or interstitial lung disease (ILD) – including those who have received a lung transplant – as well as their caregivers and biological family members. Our program 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.

It’s about finding answers.

The PFF Registry is fostering a community of patients, lung transplant recipients, caregivers, family members, health care professionals, researchers, industry partners, and others all with the same goal: finding answers for all forms of PF and ILD. 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 PF and ILD. Learn more.

It’s about community and helping you.

Hundreds of thousands of Americans are living with  PF or ILD, which can be progressive, debilitating diseases that have no cure. The PFF Registry invites patients diagnosed with PF or ILD, including those who have received a lung transplant, nonprofessional caregivers, and biological family members to participate in the PFF Community Registry. As more people contribute data, a clearer picture of PF will emerge to help lead us toward answers. Learn more.

Learn more details of the importance of our program.

You may also download copies of the previous PFF Registry annual reports.
2020 PFF Registry Second Annual Report
2019 PFF Registry First Annual Report

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.