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
Servicio de Neumología, Hospital Universitario Arnau de Vilanova, Lérida, España.
Instituto de Investigación en Enfermedades Raras, Instituto de Salud Carlos III, Madrid, España.
Arch Bronconeumol. 2014 Sep;50(9):397-403. doi: 10.1016/j.arbres.2014.02.007. Epub 2014 Apr 1.
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.
本报告描述了罕见病研究机构(西班牙国家卫生体系)国家罕见病登记处收录的罕见呼吸系统疾病登记处的一般特征、目标和组织方面,以宣传其存在并鼓励专业人员参与。收集以下病症的信息:α-1抗胰蛋白酶缺乏症、特发性气管狭窄、成人肺朗格汉斯细胞组织细胞增多症、淋巴管平滑肌瘤病、肺泡蛋白沉积症和结节病。