INSIGHTS-IPFInvestigating Significant Health Trends in IPF (INSIGHTS-IPF). Nationwide Prospective Registry.

INSIGHTS-IPF will report current and comprehensive data on Idiopathic Pulmonary Fibrosis (IPF) in the long-term. Baseline (cross-sectional part): Description of characteristics of IPF patients in terms of key (socio-) demographic data IPF risk factors, comorbidities methods used for IPF diagnosis IPF disease severity and manifestation (including lung function, cardiopulmonary exercise testing and/or exercise capacity if available, laboratory values, biomarkers) IPF treatment (detailed information on prescribed drugs and doses; non-pharmacological treatment; listing and score for lung transplantation) assessment of patient-related outcomes (PRO) such as quality of life Follow-up (prospectively up to at least 2 years after inclusion): Clinical course of IPF (e.g. in terms of symptoms, lung function, exercise capacity if available) Documentation of treatment pathways (switch/add-on/discontinuation of medication), and of non-pharmacological treatment (e.g. start of long term oxygen therapy; new listing for lung transplantation)Outcomes/events (such as acute respiratory worsening, exacerbations, hospitalisation due to any cause and due to IPF, other complications, survival) Patient-related outcomes such as quality of life, assessed once a year(for comparison with baseline) Resource use for pharmacoeconomic analyses.