Frequently Asked Questions


For Patients

  • What is the PFF Registry?
  • How does the PFF Registry differ from a clinical trial?
  • What are the goals of the PFF Registry?
  • What kind of data are collected in the PFF Registry?
  • What is the PFF Registry Biorepository?
  • What is an HRCT scan?
  • What is DLCO?
  • What is FVC?
  • Why is blood collected from patients?
  • Who manages the PFF Registry?

For Researchers

  • What kind of research on the Registry has been developed so far?
  • How can I use the PFF Registry's data for my research?
  • As a researcher, how can I get access to data from the PFF Registry?

Sign Up for PFF Registry Emails

Be the first to know when the PFF Registry opens for enrollment

Your Role in the PF Community* (Check all that apply)
I consent to receive email communications regarding: (Check all that apply)

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 a cure for PF.


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

PFF Registry

Patient Powered. Data Driven. Research Results.