Respiratory diseases registries in the national registry of rare diseases

Abstract

This report describes the general characteristics, objectives and organizational aspects of the registries of rare respiratory diseases included in the National Registry of Rare Diseases of the Research Institute for Rare Diseases (ISCIII), in order to publicize their existence and encourage the participation of professionals. Information is collected on the following conditions: alpha-1 antitrypsin deficiency, idiopathic tracheal stenosis, adult pulmonary Langerhans' cell histiocytosis, lymphangioleiomyomatosis, alveolar proteinosis, and sarcoidosis.

Keywords: Enfermedades respiratorias minoritarias; Instituto de Investigación de Enfermedades Raras; Instituto de Salud Carlos III; Rare respiratory diseases; Red Española de Registros de Enfermedades Raras para la Investigación; Registros; Registry; Sociedad Española de Neumología y Cirugía Torácica; Spanish Society of Pneumology and Thoracic Surgery.