What is a registry?

A registry collects and tracks information about the health status of patients and the care they receive. A registry also collects information from caregivers, family members, and others who contribute to the care and outcomes of patients. Unlike a clinical trial where subjects must follow a specific treatment protocol, a registry does not prescribe what should be done or require additional medications or visits. It simply captures real-world data to help researchers learn about actual care patterns, observe subjects, and measure and improve quality of care.

Researchers can request access to this  information to evaluate contributing factors, treatment outcomes, and more.

What is the PFF Registry?

The PFF Registry is a nationwide research program that encapsulates two databases – the PFF Patient Registry and PFF Community Registry. Combined, the two databases provide a wealth of data on patients diagnosed with pulmonary fibrosis (PF) or interstitial lung disease (ILD) – including those who have received a lung transplant – as well as their caregivers and biological family members. Our program enables researchers, for the first time, to explore what treatment strategies work best for patients and to find new ways to prevent, diagnose, treat, and potentially cure pulmonary fibrosis.