Program Overview
The Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO)/Interstitial Lung Disease Prospective Outcomes (ILD-PRO) Registry is a prospective, observational US patient registry supporting patient-centered research and advancing care for those diagnosed with idiopathic pulmonary fibrosis (IPF) and other interstitial lung diseases (ILD).
The IPF-PRO/ILD-PRO Registry includes more than 2,000 people with all forms of ILDs taking part in research to help better understand the natural history, treatments, and quality of life for people living with IPF and ILD and to promote the discovery of IPF and ILD biomarkers.
Currently Enrolling
The Registry is currently enrolling the new IPF-PRO Expansion Cohort, which will add 1,000 new participants with IPF to the Registry.
on ClinicalTrials.gov
Since the Registry began in 2014, IPF-PRO/ILD-PRO has supported patient-centered research, with many findings advancing care for those diagnosed with IPF and ILD. Highlights of this research include:
Antifibrotic treatment is now widely used and associated with improved outcomes in IPF
Air pollution exposure is linked to increased disease severity and increased risk of respiratory hospitalization
Persistent decline in lung function and health-related quality of life underscore the inexorably progressive nature of the disease and continued need for new treatments
Easily identified factors like oxygen needs and small declines in lung function over time are associated with significantly increased risk of death or lung transplantation
The identification of novel RNA, protein, proteomic, and metabolite biomarkers has helped determine IPF presence, severity, and progression
Machine learning-based assessment of lung fibrosis provides more prognostic information than traditional CT patterns in some patients with ILD
Read more publications and digital abstracts from the IPF-PRO/ILD-PRO Registry.
For more information on the Registry or our research, please contact us at IPF-PRO@dm.duke.edu.