Respiratory disease registries in Spain: fundamentals and organization

被引:17
|
作者
Lara, Beatriz [1 ]
Morales, Pilar [2 ]
Blanco, Ignacio [3 ]
Vendrell, Montserrat [4 ]
de Gracia Roldan, Javier [5 ]
Monreal, Mane [6 ]
Orriols, Ramon [5 ]
Isidro, Isabel [7 ]
Abu-Shams, Khalil [8 ]
Escribano, Pilar [9 ]
Villena, Victoria [10 ]
Rodrigo, Teresa [11 ]
Vidal Pla, Rafael [5 ]
Garcia-Yuste, Mariano [12 ]
Miravitlles, Marc [13 ]
机构
[1] Hosp Arnau Vilanova, Serv Neumol, Inst Recerca Biomed Lleida, Ctr Invest Biomed Red Enfermedades Resp CIBERES,I, Lleida, Spain
[2] Hosp Univ La Fe, Unidad Trasplante Pulm, Valencia, Spain
[3] Hosp Valle del Nalon, Secc Neumol, Sama De Langreo, Asturias, Spain
[4] Hosp Josep Trueta, Serv Neumol, Inst Salud Carlos III, Ctr Invest Biomed Red Enfermedades Resp CIBERES, Majadahonda, Spain
[5] Hosp Univ Vall dHebron, Serv Neumol, Barcelona, Spain
[6] Hosp Badalona Germans Trias & Pujol, Med Interna Serv, Barcelona, Spain
[7] Inst Nacl Silicosis, Oviedo, Spain
[8] Hosp Virgen del Camino, Serv Neumol, Pamplona, Spain
[9] Hosp 12 Octubre, Unidad Insuficiencia Cardiaca & Trasplante, E-28041 Madrid, Spain
[10] Hosp 12 Octubre, Serv Neumol, E-28041 Madrid, Spain
[11] Agencia Salad Publ, Barcelona, Spain
[12] Hosp Clin Univ Valladolid, Serv Cirugia Torac, Valladolid, Spain
[13] Hosp Clin Barcelona, Fundacio Clin, IDIBAPS, Barcelona, Spain
来源
ARCHIVOS DE BRONCONEUMOLOGIA | 2011年 / 47卷 / 08期
关键词
Registries; Respiratory diseases; Rare diseases; VENOUS THROMBOEMBOLISM; PULMONARY-EMBOLISM; DIAGNOSIS; TUMORS;
D O I
10.1016/j.arbres.2011.04.002
中图分类号
R56 [呼吸系及胸部疾病];
学科分类号
摘要
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 Multicenter 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. (C) 2010 SEPAR. Published by Elsevier Espana, S.L. All rights reserved.
引用
收藏
页码:389 / 396
页数:8
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