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[罗马尼亚间质性肺疾病和结节病国家登记处(REGIS):基本原理与方法]

[Romanian national registry for interstitial lung diseases and sarcoidosis (REGIS): rationale and methods].

作者信息

Strâmbu Irina, Ioniţă Diana, Belaconi Ionela, Stoia Irina, Tudorache Voicu

机构信息

Institutul de Pneumofliziologie "Marius Nasta" Bucureşti.

出版信息

Pneumologia. 2012 Jan-Mar;61(1):20-4.

PMID:22545484
Abstract

Interstitial lung diseases (ILD) are a group of extremely heterogeneous conditions (over 200), with low prevalence, but in most cases with severe impact on the quality of life and survival of the patients. The ILD group comprises: idiopathic pulmonary fibrosis, sarcoidosis, hypersensitivity pneumonitis, colagen diseases, vasculitis, eosinophilic pneumonia etc. The prevalence of these diseases is unknown in Romania; the accurate diagnosis needs access to special investigations and expertise with this group of diseases. The authors propose the initiation of a National Registry for Interstitial Lung Diseases and Sarcoidosis (REGIS), based on the lessons learned from other national ILD) registries, which should allow building-up an extended clinical expertise in ILD, evaluating epidemiological data, creating an educational platform for young physicians, better understanding of the outcome and prognosis of these diseases, shaping Romanian Guidelines for the diagnosis and management of ILD, using the data base for clinical research. The registry is started as a pilot in two Romanian centres: "Marius Nasta" Institute of Pneumology in Bucharest and Pneumology Clinic, "Victor Babey" Infectious Diseases Hospital Timişoara. After refining the inclusion criteria for the data base, editing guidelines for ILD diagnosis and launching the registry website, other Romanian centres with interest in ILD will also be able to feed information.

摘要

间质性肺疾病(ILD)是一组极其异质性的疾病(超过200种),患病率较低,但在大多数情况下对患者的生活质量和生存率有严重影响。ILD组包括:特发性肺纤维化、结节病、过敏性肺炎、胶原病、血管炎、嗜酸性粒细胞性肺炎等。这些疾病在罗马尼亚的患病率尚不清楚;准确诊断需要进行特殊检查并具备处理这类疾病的专业知识。作者建议基于从其他国家ILD登记处吸取的经验教训,启动一个国家间质性肺疾病和结节病登记处(REGIS),这将有助于积累ILD方面更广泛的临床专业知识,评估流行病学数据,为年轻医生创建一个教育平台,更好地了解这些疾病的转归和预后,制定罗马尼亚ILD诊断和管理指南,并利用数据库进行临床研究。该登记处首先在罗马尼亚的两个中心作为试点启动:布加勒斯特的“马里乌斯·纳斯塔”肺病研究所和蒂米什瓦拉“维克托·巴比”传染病医院肺病诊所。在完善数据库的纳入标准、编辑ILD诊断指南并推出登记处网站后,其他对ILD感兴趣的罗马尼亚中心也将能够提供信息。

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Pneumologia. 2012 Jan-Mar;61(1):20-4.
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