Privacy Policy

The goal of the Pulmonary Fibrosis Foundation Registry is to collect information from individuals living with pulmonary fibrosis, their caregivers and family members, and those who have received a lung transplant, in order to advance research on improved treatments and a cure. 

The Pulmonary Fibrosis Foundation (PFF) is committed to ensuring your privacy and confidentiality in the Registry. When you register online, you will be asked to provide an email address and password. This password-protected identification will be available only to you in order to access your profile in the Registry. You will determine what information is in your profile. You may change your contact information at any time. You may also withdraw your consent to be a part of the PFF Registry at any time.

The PFF Registry follows the security guidelines of the  U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All data are transmitted, stored and processed in a secure environment. The PFF Registry staff will never share your personal health information with any individual or organization without your explicit permission. Your personal health information includes your name, email address, mailing address, telephone number and date of birth.

The PFF will share your deidentified data with researchers and organizations for the purpose of developing better diagnostics, treatments and therapies for pulmonary fibrosis.

These safeguards have been established to protect the privacy and confidentiality of your personal information.

This Privacy Policy supersedes the general PFF Privacy Policy found at  https://www.pulmonaryfibrosis.org/privacy-policy.

To make our Service more useful to you, we collect Personal Data from you through our servers (which may be hosted by a third party service provider) and/or third party tools.

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.