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.