TThe 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.
As a young researcher, I deeply appreciate the participation of patients and their families. We are trying to understand and explore outcomes that are meaningful to patients, and we can only make progress with patient participation, so we're very grateful.
John Kim, MD, MS
Rectors and Visitors of the
University of Virginia
PRECISIONS is a multicenter study that will evaluate biomarkers to aid in the diagnosis of pulmonary fibrosis. Studies such as PRECISIONS would be impractical without the Registry’s expert clinical and investigative groups, public and private sector funding, and a large number of patients with diverse PF disorders.
Fernando J. Martinez, MD, MS
Weill Cornell Medicine and New York-Presbyterian Weill Cornell Medical Center
A comprehensive clinical registry representing a broad range of interstitial lung diseases is a crucial first step toward improving care for patients with ILD. We are hopeful that the PFF patient registry can provide longitudinal information to help us optimize future clinical trial design and clinical decision making to improve treatment options for patients with ILD.
Bonnie Wang, MD
University of Michigan Health System
Division of Pulmonary and Critical Care Medicine
About the PFF Registry
The PFF Registry serves as a resource to stimulate research and assist in clinical trial recruitment. Deidentified clinical data, biosamples, and HRCT scans from the Registry can be used by clinical and translational investigators in academia and industry across the country. Researchers can partner with a Care Center Network investigator to submit an ancillary studies proposal. The proposal is reviewed by the PFF Medical Team and staff along with the data coordinating center to determine whether it is scientifically valid, feasible, and does not duplicate studies that have been completed or are in development. Once approved, the data coordinating center will contact the investigator to determine the statistical analysis plan and release data and specimens for the study.
For questions about submitting a research proposal, email firstname.lastname@example.org. For companies interested in utilizing the PFF Registry for research purposes, contact email@example.com to learn more about the application process and fees.
PFF Registry Public Dashboard
The PFF Registry Public Dashboard offers a snapshot of Registry participants' demographics, diagnoses, key metrics, and medical outcomes. The interactive dashboard enables users to analyze data by filtering any number of categories as presented by various charts and graphs.
PFF Registry Protocol
The PFF Registry protocol defines the operating parameters for establishing and maintaining the Registry.
Current Studies from the PFF Registry
Browse through existing and developing PFF Registry research by filtering document type (eg, posters, abstracts, manuscripts) or research type (eg, basic/translational, clinical, patient-centered).
PFF Registry Ancillary Studies Proposal Form
To conduct research using PFF Registry data, complete and submit the ancillary studies proposal form. Please review the PFF Registry Public Dashboard, PFF Registry Protocol, and PFF Registry Projects prior to completing the form.
PFF Registry Studies
Use the tool below to explore current research studies from the PFF Registry. Each published study is available for download by clicking the coordinating "Download" button. Use the page numbers in the upper right side of the abstract tool to view more studies.
Your gift to
the PFF Patient Registry will enable us to expand patient enrollment and
provide even greater access to investigators as they search for a cure
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.
To get in touch with the PFF, please email firstname.lastname@example.org.
Patient Powered. Data Driven. Research Results.