Respiratory disease registries in Spain: fundamentals and organization

• Published in: Archivos de bronconeumología (English ed.) Vol. 47; no. 8; pp. 389 - 396
• Main Authors: Lara, Beatriz, Morales, Pilar, Blanco, Ignacio, Vendrell, Montserrat, de Gracia Roldán, Javier, Monreal, Manel, Orriols, Ramón, Isidro, Isabel, Abú-Shams, Khalil, Escribano, Pilar, Villena, Victoria, Rodrigo, Teresa, Vidal Plà, Rafael, García-Yuste, Mariano, Miravitlles, Marc
• Format: Journal Article
• Language: Spanish
• Published: 01.08.2011
• ISSN: 1579-2129
• DOI: 10.1016/j.arbres.2011.04.002

This present paper describes the general characteristics, objectives and organizational aspects of the respiratory disease registries in Spain with the aim to report their activities and increase their diffusion. The document compiles information on the following registries: the Spanish Registry of Patients with Alpha-1 Antitrypsin Deficiency, Spanish Registry of Bronchiectasis, International Registry of Thromboembolic Disease, Spanish Registry of Occupational Diseases, Spanish Registry of Pulmonary Artery Hypertension, Registry of Pleural Mesothelioma, Spanish Registry of Tuberculosis and Spanish Multi-center Study of Neuroendocrine Pulmonary Tumors. Our paper provides information on each of the registries cited. Each registry has compiled specific clinical information providing data in real situations, and completes the results obtained from clinical assays. Said information has been published both in national as well as international publications and has lead to the creation of various guidelines. Therefore, the activities of the professionals involved in the registries have spread the knowledge about the diseases studied, promoting the exchange of information among workgroups.