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.
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.
You may also download copies of the previous PFF Registry annual reports.
2021 PFF Registry Annual Report
2020 PFF Registry Annual Report
2019 PFF Registry Annual Report
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
For more information about our sponsors, click here.
Your Privacy Matters
PFF Registry News
View the latest news and updates about the PFF Registry.
For information about the PFF Registry, contact firstname.lastname@example.org.
Patient Powered. Data Driven. Research Results.