History of the PFF Registry
The former PFF Patient Registry
In 2016, the PFF Patient Registry first launched. By 2018, it reached it's goal of enrolling 2,000 patients with a diagnosis of pulmonary fibrosis or interstitial lung disease.
Thanks to the 2,000 participants, more than 40 research studies were published with an estimated worth of more than $32 million.
Unlike the current PFF Community Registry which is entirely online, patients participating in the former PFF Patient Registry enrolled in-person through the sites that comprise the PFF's nationwide Care Center Network, and they were monitored through their regularly scheduled medical appointments. Similar to the Community Registry, the Patient Registry included information about the patient's age and gender, details on how the diagnosis was made, symptoms, test results, medications, and medical outcomes. However, it included high resolution CT scans and blood samples as a requirement of enrollment, which could only be obtained through in-person visits to a doctor.
In 2018, the PFF Patient Registry closed for enrollment. For researchers, the PFF Patient Registry remains open for research proposals. Eligible participants who wish to contribute to research may join the current PFF Community Registry!
Thanks to enrollment in these registries, a clearer picture of PF is emerging.
Data from the PFF Patient Registry has resulted in more than 40 research studies worth an estimated $32 million. The research would not have been possible without data from the PFF Patient Registry.
The two registries: Key differences
Below, we've outlined a few differences between the current PFF Community Registry and the PFF Patient Registry. If you have enrolled in the now-closed PFF Patient Registry, you are eligible and encouraged to join the current PFF Community Registry! Get started today.
PFF Community Registry
- Open for enrollment!
- Unlimited capacity for participants
- Enrollment is open to more
than just patients. Eligible enrollees include:
- Patients living with pulmonary fibrosis or interstitial lung disease
- Lung transplant recipients who have had PF or ILD
- Caregivers and biological family members of patients with PF or ILD, including those who have passed away
- Enrollment and participation is entirely online
- Requires only an internet connection to participate
- Non-invasive and does not require scans, blood samples, or other bio samples
- Ongoing data allows participants to upload new information about themselves every six months
PFF Patient Registry
- Closed for enrollment
- Maximum capacity of 2,000 patients
- Open to participants with a diagnosis of pulmonary fibrosis or ILD only
- Required an in-person visit to a participating hospital
- Required blood samples and CT scans from each participant
- Today, new research continues to emerge from this registry thanks to each of the 2,000 participants!
The PFF Registry is a crucial research tool in the fight against PF. Data gathered from thousands of participants in the Registry are being used by researchers to discover the causes of PF, improve treatments, and help lead us toward answers about PF and ILD.
Thank you to each of the PFF Care Centers that continue to participate in research for the former PFF Patient Registry!
Dignity Health St. Joseph's Hospital and Medical Center
Duke University Medical Center
Inova Fairfax Hospital
John Hopkins University
Massachusetts General Hospital
Medical University of South Carolina
National Jewish Health
Regents of the University of Minnesota Twin Cities
Stony Brook University Hospital
Temple University Health System
The Ohio State University
The Pennsylvania State University
The University of Arizona
The University of Kansas Medical Center
The University of Texas HSC Houston
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
Washington University School of Medicine