Marta Almagro

Bronchiectasis in adults is a chronic disorder associated with poor quality of life and frequent exacerbations in many patients. There have been no previous international guidelines.The European Respiratory Society guidelines for the management of adult bronchiectasis describe the appropriate investigation and treatment strategies determined by a systematic review of the literature.A multidisciplinary group representing respiratory medicine, microbiology, physiotherapy, thoracic surgery, primary care, methodology and patients considered the most relevant clinical questions (for both clinicians and patients) related to management of bronchiectasis. Nine key clinical questions were generated and a systematic review was conducted to identify published systematic reviews, randomised clinical trials and observational studies that answered these questions. We used the GRADE approach to define the quality of the evidence and the level of recommendations. The resulting guideline addresses the investigation of underlying causes of bronchiectasis, treatment of exacerbations, pathogen eradication, long term antibiotic treatment, anti-inflammatories, mucoactive drugs, bronchodilators, surgical treatment and respiratory physiotherapy.These recommendations can be used to benchmark quality of care for people with bronchiectasis across Europe and to improve outcomes.

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.

<b>The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is the ERS Clinical Research Collaboration born to develop scientific, educational and advocacy activities for bronchiectasis at an international level</b>http://ow.ly/EHr030mxEcC

The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme. From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies. Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement. EDUCATIONAL AIMS: To understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician's perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient's perspective, in order to meaningfully involve patients in clinical projects.

Bronchiectasis is receiving increased awareness from clinicians, researchers, and stakeholders. However, despite the development of international and national guidelines in bronchiectasis, clinical practice does not necessarily follow quality standards and clinical recommendations. The European Multicenter Bronchiectasis Audit and Research Collaboration (EMBARC) together with the European Lung Foundation (ELF) coordinate patient-initiated activities designed to facilitate bronchiectasis awareness and care [1]. Footnotes This manuscript has recently been accepted for publication in the European Respiratory Journal . It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJ online. Please open or download the PDF to view this article. Conflict of Interest: A. Spinou has nothing to disclose. Conflict of Interest: M. Almagro has nothing to disclose. Conflict of Interest: B. Harris is a patient with bronchiectasis and a member of the ELF Bronchiectasis Patient Advisory Group. This is an unpaid, voluntary role. Conflict of Interest: J. Boyd has nothing to disclose. Conflict of Interest: T. Berg has nothing to disclose. Conflict of Interest: B. Herrero-Cortina reports payment or honoraria for lectures, presentations, manuscript writing or educational events from SEPAR (Spanish Respiratory Society). Conflict of Interest: A. Posthumous is a patient with bronchiectasis and a member of the ELF Bronchiectasis Patient Advisory Group. This is an unpaid, voluntary role. Conflict of Interest: S. Aliberti has nothing to disclose. Conflict of Interest: B. Crossley is a voluntary member of the European Lung Foundation's Patient Advisory Group, for bronchiectasis. Conflict of Interest: T.F. Ruddy has nothing to disclose. Conflict of Interest: N. Stein has nothing to disclose. Conflict of Interest: M.L. Crichton reports consultancy fees from Boxer Capital LLC, Conflict of Interest: P.C. Goeminne has nothing to disclose. Conflict of Interest: J.D. Chalmers has nothing to disclose. Conflict of Interest: M. Shteinberg reports grants from GSK, Novartis, writing fees from Bohringer Ingelheim, personal fees from GSK, Novartis, AstraZeneca, Kamada, Teva, GSK, Zambon, Airphysio, Bonus Biogroup, Syncrony medical, non-financial support from GSK, Boehringer Ingelheim, Actelion, GSK, Rafa.