Submit a research proposal
A clinical registry representing a broad range of interstitial lung disease (ILD) is a crucial first step toward improving care. We're hopeful that the PFF Registry can provide longitudinal information to help us optimize future clinical trial design and clinical decision making to improve treatment options.
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.
How to obtain the data
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.
Ancillary Studies: Available by request
More than 40 publications have been published using PFF Registry data. Copies of the abstracts and manuscripts are available upon request.
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.
The Registry has emerged as a vital resource for the PF research community. Using biospecimens and clinical data collected from Registry participants, we are improving our understanding of PF pathobiology, developing clinically actionable biomarkers, and identifying new targets for therapeutic intervention.
Dr. Justin Oldham
Michigan Medicine
The PFF Registry provides a rich source of data that can generate real-world evidence to inform clinical practices as well as future clinical trial designs to optimize therapeutic strategies for patients with PF. We are grateful to all the patients and caregivers who have participated and those who continue to enroll in the Registry.
Dr. Tejaswini Kulkarni
UAB Medicine (University of Alabama Birmingham)
I am so grateful to the patients and PFF staff that have made the PFF Registry a reality. This Registry provides an unparalleled resource that enables clinicians and researchers like myself to better understand the causes and impacts of pulmonary fibrosis across the United States.
Dr. Gillian Goobie
UBC (University of British Columbia)