Registros de enfermedades respiratorias en España: fundamentos y organización / Respiratory disease registries in Spain: fundamentals and organization

En el presente trabajo se describen las características generales, objetivos y aspectos organizativos de losregistros de enfermedades respiratorias existentes en España con el objetivo de dar a conocer su actividade incrementar su difusión.Se recoge información sobre los siguientes registros: Registro Español de Pacientes con Déficit de Alfa-1antitripsina, Registro Español de Bronquiectasias, Registro Internacional de Enfermedad Tromboembólica,Registro Español de Enfermedades de Origen Laboral, Registro Español de Hipertensión ArterialPulmonar, Registro de Mesotilioma Pleural, Registro Español de Tuberculosis y Estudio multicéntricoEspañol de Tumores Pulmonares Neuroendocrinos.Nuestro trabajo aporta información de cada uno de los citados registros.Cada registro ha recogido información clínica específica que aporta datos en situaciones reales, y completalos resultados obtenidos de los ensayos clínicos. Dicha información se ha difundido en publicacionestanto nacionales como internacionales y ha permitido la elaboración de varias normativas. Por tanto,las actividades llevadas a cabo por los profesionales vinculados a los registros han conseguido difundirel conocimiento sobre las enfermedades estudiadas propiciando el intercambio de información entregrupos(AU)

This present paper describes the general characteristics, objectives and organizational aspects of therespiratory 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 withAlpha-1 Antitrypsin Deficiency, Spanish Registry of Bronchiectasis, International Registry of ThromboembolicDisease, Spanish Registry of Occupational Diseases, Spanish Registry of Pulmonary Artery Hypertension, Registry of Pleural Mesothelioma, Spanish Registry of Tuberculosis and Spanish MulticenterStudy 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 completesthe results obtained from clinical assays. Said information has been published both in national as well asinternational publications and has lead to the creation of various guidelines. Therefore, the activities of theprofessionals involved in the registries have spread the knowledge about the diseases studied, promotingthe exchange of information among workgroups(AU)

[Respiratory disease registries in Spain: fundamentals and organization]. / Registros de enfermedades respiratorias en España: fundamentos y organización.

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.

Reported occupational respiratory diseases in three Spanish regions.

BACKGROUND: In 2002, a voluntary registry of occupational respiratory diseases was initiated in the test phase in Asturias, Catalonia, and Navarre (Spain). Based on data from the fully implemented voluntary registry, we assessed the differences in the incidence and characteristics of the diseases reported in the three regions studied and compared them with those notified to the compulsory official system. METHODS: Physicians whose daily practice includes patients with occupational respiratory diseases were invited to participate. Newly diagnosed cases occurring during 2003 in the work force of the three regions studied were reported on a notification form every 2 months. Data from the compulsory official notification system were obtained from statistics on work-related diseases for possible disability benefits. RESULTS: Five hundred thirty-three new cases, representing a cumulative incidence of 183.52 (168.27-199.78) per million workers per year, were reported. The number of cases and the incidence, overall and for each disease, causes of the diseases, and the occupations varied considerably between regions. The number of cases reported to the voluntary system was more than threefold greater than the number reported to the compulsory official system. CONCLUSIONS: The compulsory scheme for reporting occupational respiratory diseases is seriously under-reporting in the three Spanish regions studied. Our voluntary surveillance program, which showed considerable differences in the characteristics and incidence of these diseases among the regions, appears to be more effective.

Normativa del asma ocupacional / Guidelines for Occupational Asthma

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