Study design
Objectives of ILD-PRO Registry
- Describe current approaches to the diagnosis of chronic progressive fibrosing ILDs.
- Examine the natural history of chronic progressive fibrosing ILDs and their impact on patients, including on their quality of life.
- Describe interactions with the healthcare system and treatment practices among patients with chronic progressive fibrosing ILDs.
- Investigate disease biomarkers using biological samples linked to clinical data.
Design of ILD-PRO Registry
- The ILD-PRO Registry will enroll patients with chronic progressive fibrosing ILDs other than IPF at over 45 sites across the US.
- Patients aged ≥30 years with a non-IPF ILD of any duration that was diagnosed or confirmed at the enrolling center, and reticular abnormality and traction bronchiectasis (with or without honeycombing) confirmed by HRCT scan and/or lung biopsy, are eligible to participate.
- Patients must meet ≥1 of the following criteria for ILD progression in the past 24 months:
Data collection
- Retrospective data from the prior 24 months will be collected at enrollment. Patients will then be followed prospectively while receiving usual care. Regular follow-up from a call center will confirm vital status. Biological samples, including DNA, RNA and plasma, will also be collected.
