The PFF Patient Registry, established in 2016, collects medical data from more than 2,000 patients and is administered at participating PFF Care Centers across the United States.

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

Banner University Medical Center
Baylor University Medical Center
Cleveland Clinic
Cleveland Clinic Florida
Columbia University
Creighton University
Duke University Medical Center
Emory University
Henry Ford Health System
Henry Ford Health System
Houston Methodist Hospital
Indiana University
Inova Fairfax Medical Campus
Jefferson Health
Johns Hopkins University
LeBauer Health Care at Cone Health
Loyola University Medical Center
Massachusetts General Hospital
Mayo Clinic
Medical University of South Carolina
New York University School of Medicine
Northwestern Memorial Hospital
Northwestern Memorial Hospital
Penn Medicine
Piedmont Healthcare
Spectrum Health System
St. Elizabeth’s Medical Center
St. Luke's Hospital
Stanford Health Center
Stony Brook University Hospital
Stony Brook University Hospital
Temple Health
The Ohio State University Wexner Medical Center
The University of Kansas Hospital
The University of Vermont Medical Center
Tulane University School of Medicine
University of Alabama at Birmingham
University of Arizona
University of California at Davis
University of California at Davis
University of California at Los Angeles
University of California at San Francisco
University of Chicago
University of Chicago
University of Cincinnati Medical Center
University of Colorado Anschutz Medical Campus
University of Florida Health
University of Iowa
University of Kentucky Research Foundation
University of Louisville School of Medicine
University of Maryland Medical Center
University of Michigan Health System
University of Minnesota Medical Center
University of Pittsburgh
University of Rochester Medical Center
University of Texas Health Science Center at Houston
University of Texas Health Science Center at San Antonio
University of Texas Southwestern Medical Center
University of Utah Health Care
University of Virginia Health Systems
University of Washington Medical Center
UW Health - University of Wisconsin
Vanderbilt University Medical Center
Washington University School of Medicine
Washington University School of Medicine
Weill-Cornell Medical Center

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.

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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.