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Baseline characteristics of 1461 participants in the Pulmonary Fibrosis Foundation Patient Registry

Rationale: Patient demographic, assessment, and outcome data for interstitial lung diseases (ILD) in real-world settings are lacking. The US-based Pulmonary Fibrosis Foundation Patient Registry (PFF-PR) is collecting such data in a cohort projected to comprise at least 2000 subjects. Methods: The PFF-PR enrolls consenting patients at least 18 years old with ILD, excluding sarcoidosis, LAM, PAP, CF, or amyloidosis. Data collected includes history, examination, pulmonary testing, and chest CTs obtained as part of usual care, and patient reported outcomes. We evaluated the baseline characteristics of the first 1461 participants. Results: Of 1461 participants, 57% had IPF. Non-IPF cases included other idiopathic interstitial pneumonias (11%), collagen vascular/autoimmune disease (17%), hypersensitivity pneumonitis (9%), and other (5%). Multidisciplinary conference was used to confirm diagnosis in 564 (37%) of cases: 331 (40%) of IPF and 233 (37%) of non-IPF cases. Lung biopsy was performed in 286 (34%) of IPF and 271 (43%) of non-IPF subjects. In IPF and non-IPF, respectively, surgical biopsy was most common (n=247 vs 212) compared to transbronchial (n=30 vs 50) or cryobiopsy (n=9 vs 9). The use of immunosuppressive and anti-fibrotic medications differed between IPF and non-IPF subjects. Conclusions: This analysis demonstrates the feasibility and potential output of this multi-institutional collaborative effort.