The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC): experiences from a successful ERS Clinical Research Collaboration

, , EMBARC/ELF patient advisory group, James D. Chalmers (Lead / Corresponding author), Megan L. Crichton, Pieter C. Goeminne, Michael R. Loebinger, Charles Haworth, Marta Almagro, Montse Vendrell, Anthony De Soyza, Raja Dhar, Lucy Morgan, Francesco Blasi, Stefano Aliberti, Jeanette Boyd, Eva Polverino

    Research output: Contribution to journalReview articlepeer-review

    33 Citations (Scopus)
    254 Downloads (Pure)

    Abstract

    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.

    Educational aims: 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.

    Original languageEnglish
    Pages (from-to)180-192
    Number of pages13
    JournalBreathe
    Volume13
    Issue number3
    Early online date31 Aug 2017
    DOIs
    Publication statusPublished - 1 Sept 2017

    Keywords

    • Journal article
    • Review

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