Latin American Registry of Idiopathic Pulmonary Fibrosis REFIPI

Abstract

Introduction: idiopathic pulmonary fibrosis (IPF) is the most common of the idiopathic interstitial pneumonias with the worst prognosis. The incidence and prevalence, as well as the characteristics of the patients, vary throughout the world and are not very well known. To obtain regional data from Latin America, the department of interstitial diseases of the Latin American Thorax Association (ALAT) proposed, in 2014, to carry out the first regional registry of idiopathic pulmonary fibrosis, called REFIPI.
Methodology: REFIPI is a multicenter, multinational, cross-sectional and descriptive study, where variables were recorded: demographic, clinical, laboratory, lung function, chest tomography, lung biopsy, treatments administered, adverse events due to antifibrotic agents and mortality.
Results: between 2014 and 2019, the digital platform and the registry of 974 IPF cases were developed, with the participation of 14 Latin American countries, being the first regional IPF registry. This was possible thanks to the participation of 157 pulmonology specialists who contributed patients to the project.
Conclusions: the development of the IPF registry ceased to be a dream and became a reality, providing valuable information on demographic and clinical data on the disease, as well as deficiencies and needs in different countries of the Latin American continent.