There is no question that the Registry allows us to impact the lives of our patients and future patients in a positive way because it allows us to ask and perhaps answer essential questions in PF.

 

Ayodeji Adegunsoye, MD, MS
Assistant Professor of Medicine, University of Chicago

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.

SUBMIT A PROPOSAL

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 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

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, 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. 


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.