Join the PFF Community Registry
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.
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
Columbia University
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
Ayodeji Adegunsoye, MD, MS
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 PFF Patient Registry are available for use by clinical and translational investigators in academia and industry.
Researchers can partner with a PFF Care Center Network (CCN) investigator to submit a proposal for an ancillary study. Researchers without a CCN partner can still submit a study proposal to access the Registry data for a fee. Contact partnerships@pulmonaryfibrosis.org to learn more about the application process and fees.
Proposals are evaluated on scientific validity, feasibility, and other criteria. Reviews average six to eight weeks. Once approved, the PFF Registry team will notify the proposal author, and then the data coordinating center will contact the author to execute agreements, determine the statistical analysis plan, and release data and specimens for the study.
For questions about submitting a ancillary study proposal, email registry@pulmonaryfibrosis.org.
Before submitting a proposal
PFF Registry Protocol:
The PFF Registry protocol defines the operating parameters for establishing and maintaining the
Registry.
PFF Data dictionary: The PFF Data dictionary outlines the contents of the PFF Registry and descriptions of the data variables.
PFF Registry Ancillary Studies: Use the tool below this section to explore current ancillary 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.
PFF Registry Ancillary Studies Proposal Form: To conduct research using PFF Registry data, complete and submit the ancillary studies proposal form, which will be assessed by the PFF Registry Scientific Review Committee. Please review the PFF Registry Protocol and Registry studies prior to completing the form.
Submit a Proposal
Ancillary Studies
Use the tool below to explore current ancillary 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.
The PFF Registry: Insights from a Research Expert
Dr. Ayodeji Adegunsoye of the University of Chicago used PFF Registry data to study outcomes in patients with pulmonary fibrosis, specifically among diverse racial groups. Watch the short video below to as he explains his work and some of the important research that has emerged from the Registry.
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. 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.