Respiratory diseases registries in the national registry of rare diseases

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 par...

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Veröffentlicht in:Archivos de bronconeumología (English ed.) 2014-09, Vol.50 (9), p.397-403
Hauptverfasser: Lara Gallego, Beatriz, Abaitua Borda, Ignacio, Galán Gil, Genaro, Castillo Villegas, Diego, Casanova Espinosa, Álvaro, Cano Jiménez, Esteban, Ojanguren Arranz, Iñigo, Posada de la Paz, Manuel
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Sprache:eng ; spa
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Zusammenfassung: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.
ISSN:1579-2129
DOI:10.1016/j.arbres.2014.02.007