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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.
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
Ayodeji Adegunsoye, MD, MS
Assistant Professor of Medicine, University of Chicago
Utilizing the PFF Registry for Research
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. Proposals are evaluated on scientific validity, feasibility, and other criteria. Once approved, the Registry 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 registry@pulmonaryfibrosis.org. For companies interested in utilizing the PFF Registry for research purposes, contact partnerships@pulmonaryfibrosis.org to learn more about the application process and fees.
The PFF Registry: Insights from a Research Expert
PFF Registry Protocol
The PFF Registry protocol defines the operating parameters for establishing and maintaining the Registry.
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 Protocol prior to completing the form.
PFF Registry Studies
Use the tool below to explore current research studies from the PFF Registry. Some published studies are 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.
Donate Today
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
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. To review our policy, click here.
PFF Registry News
To view the latest news and updates about the PFF Registry, click here.
Contact Us
To get in touch with the PFF, please email registry@pulmonaryfibrosis.org.
PFF Registry
Patient Powered. Data Driven. Research Results.