Frequently Asked Questions

About the PFF Registry

  • What is the PFF Registry?
  • Who manages the PFF Registry?
  • What are the goals of the PFF Registry?
  • What kind of data is collected in the PFF Registry?

About the Patient Registry

  • What is the Patient Registry?
  • How do I join the Patient Registry?
  • What kinds of data are collected in the PFF Patient Registry?
  • Why is blood collected from patients?
  • What is the PFF Patient Registry biorepository?
  • What is an HRCT scan?
  • What is DLCO?
  • What is FVC?
  • If I’m in the Patient Registry, can I participate in the Community Registry?

About the PFF Community Registry

  • What is the PFF Community Registry?
  • Who manages the PFF Community Registry?
  • What is the purpose of the PFF Community Registry?
  • Can I join the PFF Community Registry?
  • How do I join?
  • I have been affected by PF as a family member, caregiver, and patient. Which group should I join when I first enroll into the PFF Community Registry?
  • Why do I have to consent to be in the PFF Community Registry?

About Your Participation 

  • What can I expect as a participant?
  • What information is collected by the PFF Community Registry?
  • How long does it take to complete a set of surveys?
  • What is REDCap Cloud? What is myREDCap Cloud?
  • Do I have to pay to join the PFF Community Registry?
  • Will I be compensated for participating?
  • Will I be offered additional medical services?
  • When does my participation in the PFF Community Registry end?
  • How will I know when it is time to complete my next survey?
  • Can I participate in the PFF Community Registry if I do not have access to a computer, a mobile device, or the internet?
  • I struggle with computers and technology. Is it okay if someone helps me respond to surveys?
  • Will I get results from my surveys back?
  • I’m trying to answer a survey question, but I don’t see an answer option that perfectly describes my situation. What do I do?
  • I no longer wish to be a part of the PFF Community Registry. How do I end my participation?
  • What if my contact information has changed?

About Optional Research & Educational Events

  • When will I receive information about participating in additional research?
  • How do I learn more about these additional research projects?
  • What types of educational events will I receive information about?

About Leaving the PFF Community Registry

  • What if I no longer want to participate in the PFF Community Registry?
  • Can someone else end my participation?

About Privacy and Information

  • What is my information used for?
  • Will my information be shared with others?
  • What is your privacy policy?

About Technical Issues

  • I’ve tried to create a myREDCap Cloud account but have not received any emails. What should I do?
  • I am having trouble logging into the PFF Community Registry. What should I do?
  • Can I complete surveys using my smartphone or tablet?
  • How do I know which survey forms still need to be completed?
  • I made a mistake in answering a question and cannot go back to fix it. Can I change my answer?
  • What if I have additional questions or concerns?

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 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 registry@pulmonaryfibrosis.org.

PFF Registry

Patient Powered. Data Driven. Research Results.