Join the PFF Community Registry
Information from the PFF Patient Registry already has been used in over 40 studies representing more than $32 million in disease research.
What is the PFF Patient Registry?
Since 2016, the PFF Patient Registry has enrolled and followed the care of thousands of patients at participating PFF Care Centers. Information in the PFF Patient Registry includes: patient demographics such as age and gender, details on how the diagnosis was made, test results, medications, medical events, a blood sample with consent at the time of enrollment, high resolution CT (HRCT) scans, and patient-reported outcomes.
Data from the PFF Patient Registry have been used in over 40 research studies representing over $32 million in research savings.
Can I enroll in the PFF Patient Registry?
No, enrollment for the PFF Patient Registry is closed at this time. During the past five years, the 2,000 participants in the PFF Patient Registry made tremendous amounts of data available to researchers, and now, a clearer picture of PF is emerging. The PFF Patient Registry is expected to re-open in 2023. In the meantime, you can enroll in the PFF Community Registry.
Participating PFF Care Centers
Dignity Health St. Joseph's Hospital and Medical Center
Duke University Medical Center
Inova Fairfax Hospital
John Hopkins University
Massachusetts General Hospital
Mayo Clinic
Medical University of South Carolina
National Jewish Health
Northwestern University
Piedmont Healthcare
Regents of the University of Minnesota Twin Cities
Stanford University
Stony Brook University Hospital
Temple University Health System
The Ohio State University
The Pennsylvania State University
The University of Arizona
The University of Texas HSC Houston
Tulane University
UCLA, David Geffen School of Medicine at UCLA
University of Alabama at Birmingham
University of California at San Francisco
University of Chicago
University of Cincinnati
University of Louisville
University of Maryland
University of Miami School of Medicine
University of Michigan
University of Pennsylvania
University of Pittsburgh
University of Rochester
University of Texas Southwestern Medical Center
University of Utah
University of Virginia Interstitial Lung Disease Clinic
University of Washington
UTHSC - San Antonio
Vanderbilt University
Washington University School of Medicine
Weill-Cornell
Yale University
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. Review our privacy policy.
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.
PFF Registry
Patient Powered. Data Driven. Research Results.