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 Registry has enrolled and followed the care of over 2000 patients within the PFF Care Centers. Looking ahead, the Registry will expand to the community to include data reported directly from PF patients, PF patients who are lung transplant recipients, caregivers, and family members. We invite you to join and help to advance  research on this devastating disease.

 
It's about finding a cure

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

It’s about research.

The PFF Registry offers a wealth of longitudinal data on this devastating disease. There are two datasets. First, the PFF Care Center Registry includes nearly 2,000 participants currently in long-term follow-up. Second, the PFF Community Registry provides insight into the experience of pulmonary fibrosis patients, lung transplant recipients, caregivers, and family members. Learn more.

 

It's about community and helping you

It’s about community and helping you.

Hundreds of thousands of Americans are living with pulmonary fibrosis, which, in some, can be a progressive, debilitating lung disease for which there is no cure. 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 improve health care and outcomes. Learn more.

 

Donate Today

Your gift to the PFF Patient 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

.

Genentech_high res 

Visionary Partner

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United Therapeutics 

Sustaining Partner

.Boehringer Ingelheim

 

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.