PFF Patient Registry


The First Step to a Cure

The Pulmonary Fibrosis Foundation (PFF) is leading the charge to find a cure for pulmonary fibrosis, and the first step is to increase our knowledge of PF, a family of diseases that impacts the lives of so many. To achieve this, the Foundation sought input on unmet needs from PF clinicians, scientific leaders, and the patient community. It became clear that the absence of a large nationwide patient registry and biorepository was keeping researchers from taking critical steps toward a cure.


what is the pff patient registry?

The PFF Patient Registry is a valuable research tool available in the fight against PF.  It is a collection of information about PF patients, including their diagnosis and how it was made, lab and test results, medications taken, and medical outcomes such as hospitalization, lung transplantation, and death.  Participants are also asked to answer questions about their health, PF symptoms, and how they impact their lives.  When this information, which patients agree to share with the Registry, is collected over time from lots of patients, it provides a tremendous resource for research into the causes of and treatments for pulmonary fibrosis.

All Registry data will come from patients seen at CCN sites, ensuring standard collection procedures and controls for maximum data integrity.  The information is always de-identified, which means that researchers who use it can never learn whose medical data it is.

Participants may choose to contribute, at the time they enroll, blood samples to a biorepository that will store them for use in future research. When combined with the information in the Registry, these samples will help scientists find new causes of PF, identify means of determining whether treatments are working, improve the ways doctors manage the disease, and help discover new treatments.

what are the goals of the pff patient registry?

Our initial goal is the collection of data from 2,000 patients with all kinds of PF to create the largest research resource of its kind. Over time, and with additional funding, we aim to:

  • Increase the sources of data we can gather, such as adding in data from a patient's local pulmonologist.
  • Gather more blood samples from Registry patients to look at the relationships between biomarkers and the clinical data over time.
  • Enroll more than 2,000 patients to better study each different types of disease causing pulmonary fibrosis.
  • Facilitate recruitment for clinical trials
  • Share this resource with as many researchers as possible to support research into the understanding of these terrible diseases.
  • Use Registry data to continuously reassess and improve evidence-based clinical guidelines.

How can patients participate in the pff patient registry?

Patients with PF who are being seen at any of our participating Care Center Network sites may be eligible to participate in the Registry. View map of CCN sites

Participation does not require additional visits or changes to your medical care or PF treatment. Patients will be asked to share their de-identified medical data with the Registry, complete short questionnaires during each appointment, and possibly contribute a blood sample to the biorepository.

If you are a patient interested in participating, contact the care team at your CCN site to learn more. 

How will the PFF Patient Registry benefit patients?

All data included in the PFF Patient Registry will be used to foster research to better understand PF, drive toward a cure, and improve the lives of those living with PF. See the chart below.

(Click to view full size image)
click to enlarge

How is the PFF Patient Registry funded?

The PFF Patient Registry is funded through the generous support of corporations, foundations, and individuals who have been impacted by PF. With a shared belief that a comprehensive registry is fundamentally important to improving the lives of those affected by the disease. If you would like to contribute to this important program, please donate now.

For more information, call 844.TalkPFF (844.825.5733) or email pcc@pulmonaryfibrosis.org.
footer_txt_bblBook a PFF Ambassador for your event.   Call 844.TalkPFF >