Chalmers James D, Crichton Megan, Goeminne Pieter C, Loebinger Michael R, Haworth Charles, Almagro Marta, Vendrell Montse, De Soyza Anthony, Dhar Raja, Morgan Lucy, Blasi Francesco, Aliberti Stefano, Boyd Jeanette, Polverino Eva
Scottish Centre for Respiratory Research, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
AZ Nikolaas, Sint-Niklaas, Belgium.
Breathe (Sheff). 2017 Sep;13(3):180-192. doi: 10.1183/20734735.005117.
In contrast to airway diseases like chronic obstructive pulmonary disease or asthma, and rare diseases such as cystic fibrosis, there has been little research and few clinical trials in bronchiectasis. Guidelines are primarily based on expert opinion and treatment is challenging because of the heterogeneous nature of the disease. In an effort to address decades of underinvestment in bronchiectasis research, education and clinical care, the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) was established in 2012 as a collaborative pan-European network to bring together bronchiectasis researchers. The European Respiratory Society officially funded EMBARC in 2013 as a Clinical Research Collaboration, providing support and infrastructure to allow the project to grow. EMBARC has now established an international bronchiectasis registry that is active in more than 30 countries both within and outside Europe. Beyond the registry, the network participates in designing and facilitating clinical trials, has set international research priorities, promotes education and has participated in producing the first international bronchiectasis guidelines. This manuscript article the development, structure and achievements of EMBARC from 2012 to 2017.
To understand the role of Clinical Research Collaborations as the major way in which the European Respiratory Society can stimulate clinical research in different disease areasTo understand some of the key features of successful disease registriesTo review key epidemiological, clinical and translational studies of bronchiectasis contributed by the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) project in the past 5 yearsTo understand the key research priorities identified by EMBARC for the next 5 years.
与慢性阻塞性肺疾病或哮喘等气道疾病以及囊性纤维化等罕见疾病不同,支气管扩张症的研究和临床试验较少。指南主要基于专家意见,且由于该疾病的异质性,治疗具有挑战性。为了弥补数十年来在支气管扩张症研究、教育和临床护理方面的投资不足,欧洲多中心支气管扩张症审计与研究协作组织(EMBARC)于2012年成立,作为一个泛欧洲协作网络,汇聚支气管扩张症研究人员。欧洲呼吸学会于2013年正式资助EMBARC作为一项临床研究协作项目,提供支持和基础设施以使该项目得以发展。EMBARC现已建立了一个国际支气管扩张症注册机构,在欧洲内外30多个国家开展活动。除了注册机构,该网络还参与设计和推动临床试验,确定了国际研究重点,促进教育,并参与制定了首个国际支气管扩张症指南。本文阐述了EMBARC在2012年至2017年期间的发展、结构和成就。
了解临床研究协作作为欧洲呼吸学会在不同疾病领域促进临床研究的主要方式的作用了解成功的疾病注册机构的一些关键特征回顾欧洲多中心支气管扩张症审计与研究协作组织(EMBARC)项目在过去5年中对支气管扩张症进行的关键流行病学、临床和转化研究了解EMBARC确定的未来5年的关键研究重点。