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

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 180-192 ◽  
Author(s):  
James D. Chalmers ◽  
Megan Crichton ◽  
Pieter C. Goeminne ◽  
Michael R. Loebinger ◽  
Charles Haworth ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Clinical Research ◽  
Research Collaboration ◽  
Clinical Care ◽  
Research Priorities ◽  
Chronic Obstructive ◽  
List Type ◽  
European Respiratory Society ◽  
Obstructive Pulmonary Disease ◽  
Research Education

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 aimsTo 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

scholarly journals Telemedicine in chronic obstructive pulmonary disease

Breathe ◽  
2016 ◽  
Vol 12 (4) ◽  
pp. 350-356 ◽  
Author(s):  
Nicolino Ambrosino ◽  
Guido Vagheggini ◽  
Stefano Mazzoleni ◽  
Michele Vitacca
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Task Force ◽  
Chronic Obstructive ◽  
List Type ◽  
European Respiratory Society ◽  
Obstructive Pulmonary Disease ◽  
Economic Issues ◽  
Legal Problems

Telemedicine is a medical application of advanced technology to disease management. This modality may provide benefits also to patients with chronic obstructive pulmonary disease (COPD). Different devices and systems are used. The legal problems associated with telemedicine are still controversial. Economic advantages for healthcare systems, though potentially high, are still poorly investigated. A European Respiratory Society Task Force has defined indications, follow-up, equipment, facilities, legal and economic issues of tele-monitoring of COPD patients including those undergoing home mechanical ventilation.Key pointsThe costs of care assistance in chronic disease patients are dramatically increasing.Telemedicine may be a very useful application of information and communication technologies in high-quality healthcare services.Many remote health monitoring systems are available, ensuring safety, feasibility, effectiveness, sustainability and flexibility to face different patients’ needs.The legal problems associated with telemedicine are still controversial.National and European Union governments should develop guidelines and ethical, legal, regulatory, technical, administrative standards for remote medicine.The economic advantages, if any, of this new approach must be compared to a “gold standard” of homecare that is very variable among different European countries and within each European country.The efficacy of respiratory disease telemedicine projects is promising (i.e.to tailor therapeutic intervention; to avoid useless hospital and emergency department admissions, and reduce general practitioner and specialist visits; and to involve the patients and their families).Different programmes based on specific and local situations, and on specific diseases and levels of severity with a high level of flexibility should be utilised.A European Respiratory Society Task Force produced a statement on commonly accepted clinical criteria for indications, follow-up, equipment, facilities, legal and economic issues also of telemonitoring of ventilator-dependent chronic obstructive pulmonary disease patients.Much more research is needed before considering telemonitoring a real improvement in the management of these patients.Educational aimsTo clarify definitions of aspects of telemedicineTo describe different tools of telemedicineTo provide information on the main clinical resultsTo define recommendations and limitations

scholarly journals Research priorities in bronchiectasis: a consensus statement from the EMBARC Clinical Research Collaboration

2016 ◽  
Vol 48 (3) ◽  
pp. 632-647 ◽  
Author(s):  
Stefano Aliberti ◽  
Sarah Masefield ◽  
Eva Polverino ◽  
Anthony De Soyza ◽  
Michael R. Loebinger ◽  
...  
Keyword(s):  
Clinical Research ◽  
Research Collaboration ◽  
Consensus Statement ◽  
Research Priorities ◽  
Healthcare Systems ◽  
Important Research ◽  
European Respiratory Society ◽  
High Quality Research ◽  
Modified Delphi

Bronchiectasis is a disease of renewed interest in light of an increase in prevalence and increasing burden on international healthcare systems. There are no licensed therapies, and large gaps in knowledge in terms of epidemiology, pathophysiology and therapy. The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration, funded by ERS to promote high-quality research in bronchiectasis. The objective of this consensus statement was to define research priorities in bronchiectasis. From 2014 to 2015, EMBARC used a modified Delphi process among European bronchiectasis experts to reach a consensus on 55 key research priorities in this field. During the same period, the European Lung Foundation collected 711 questionnaires from adult patients with bronchiectasis and their carers from 22 European countries reporting important research priorities from their perspective. This consensus statement reports recommendations for bronchiectasis research after integrating both physicians and patients priorities, as well as those uniquely identified by the two groups. Priorities identified in this consensus statement provide the clearest possible roadmap towards improving our understanding of the disease and the quality of care for patients with bronchiectasis.

scholarly journals Patient participation in ERS guidelines and research projects: the EMBARC experience

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 194-207 ◽  
Author(s):  
James D. Chalmers ◽  
Alan Timothy ◽  
Eva Polverino ◽  
Marta Almagro ◽  
Thomas Ruddy ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Engagement ◽  
Clinical Guidelines ◽  
Patient Involvement ◽  
Research Collaboration ◽  
Clinical Care ◽  
List Type ◽  
Research Projects ◽  
Educational Activities ◽  
Specific Patient

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 aimsTo 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.

scholarly journals Pulmonary Rehabilitation of Chronic Obstructive Pulmonary Diseases (Review of Clinical Trials, National and International Recommendations)

2020 ◽  
Vol 99 (5) ◽  
pp. 26-37
Author(s):  
T.N. Bilichenko
Keyword(s):  
Clinical Trials ◽  
Pulmonary Rehabilitation ◽  
Randomized Clinical Trials ◽  
Clinical Effectiveness ◽  
Physical Rehabilitation ◽  
Chronic Obstructive ◽  
European Respiratory Society ◽  
Obstructive Pulmonary Disease ◽  
Clinical Recommendations ◽  
Chronic Obstructive Pulmonary Diseases

Aim. The review of data from randomized clinical trials, results of systematic reviews, international and national clinical recommendations on the problem of pulmonary rehabilitation (PR) in chronic obstructive pulmonary disease (COPD) was carried out. This analysis of the studies included the databases e-library, MEDLINE, PubMed and Cochrane libraries on the problem of pathophysiology and methods of physical rehabilitation of COPD. The analysis took into account the opinions of expert groups of clinical recommendations developers of the Russian respiratory society, the European respiratory society, and the American thoracic society, presented inthis review. The data of studies confirm the clinical effectiveness of physical rehabilitation methods for COPD that take into account the unique needs of a complex patient. Pulmonary rehabilitation improves the quality of life associated with health, reduces the incidence of exacerbations and mortality of patients with COPD. Increasing the availability and improving PR programs based on individual assessment of the patient’s physical capabilities will increase the use of this method of treatment.

Indacaterol in the Treatment of Chronic Obstructive Pulmonary Disease: From Clinical Trials to Daily Practice

2014 ◽  
Vol 9 (2) ◽  
pp. 96-101
Author(s):  
Cristoforo Incorvaia ◽  
Erminia Ridolo ◽  
Edoardo Riario-Sforza ◽  
Marcello Montagni ◽  
Gian Riario-Sforza
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Clinical Trials ◽  
Pulmonary Disease ◽  
Daily Practice ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease

scholarly journals Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go

2019 ◽  
Vol 8 (4) ◽  
pp. 555 ◽  
Author(s):  
Cátia Caneiras ◽  
Cristina Jácome ◽  
Sagrario Mayoralas-Alises ◽  
José Ramon Calvo ◽  
João Almeida Fonseca ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Experience ◽  
Clinical Care ◽  
Research Priorities ◽  
Specific Patient ◽  
Quality Healthcare ◽  
Body Of Knowledge ◽  
Number Of Patients ◽  
Patient Reported ◽  
System Sustainability

The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.

scholarly journals A Roadmap to Inform Development, Validation and Approval of Digital Mobility Outcomes: The Mobilise-D Approach

2020 ◽  
Vol 4 (1) ◽  
pp. 13-27 ◽  
Author(s):  
Lynn Rochester ◽  
Claudia Mazzà ◽  
Arne Mueller ◽  
Brian Caulfield ◽  
Marie McCarthy ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Health Care Professionals ◽  
Digital Health ◽  
Disease Status ◽  
Proximal Femoral Fracture ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Physical Mobility ◽  
High Level

Health care has had to adapt rapidly to COVID-19, and this in turn has highlighted a pressing need for tools to facilitate remote visits and monitoring. Digital health technology, including body-worn devices, offers a solution using digital outcomes to measure and monitor disease status and provide outcomes meaningful to both patients and health care professionals. Remote monitoring of physical mobility is a prime example, because mobility is among the most advanced modalities that can be assessed digitally and remotely. Loss of mobility is also an important feature of many health conditions, providing a read-out of health as well as a target for intervention. Real-world, continuous digital measures of mobility (digital mobility outcomes or DMOs) provide an opportunity for novel insights into health care conditions complementing existing mobility measures. Accepted and approved DMOs are not yet widely available. The need for large collaborative efforts to tackle the critical steps to adoption is widely recognised. Mobilise-D is an example. It is a multidisciplinary consortium of 34 institutions from academia and industry funded through the European Innovative Medicines Initiative 2 Joint Undertaking. Members of Mobilise-D are collaborating to address the critical steps for DMOs to be adopted in clinical trials and ultimately health care. To achieve this, the consortium has developed a roadmap to inform the development, validation and approval of DMOs in Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease and recovery from proximal femoral fracture. Here we aim to describe the proposed approach and provide a high-level view of the ongoing and planned work of the Mobilise-D consortium. Ultimately, Mobilise-D aims to stimulate widespread adoption of DMOs through the provision of device agnostic software, standards and robust validation in order to bring digital outcomes from concept to use in clinical trials and health care.

scholarly journals Breathlessness and opioid prescribing in COPD in general practice: a cross-sectional, observational study

2020 ◽  
Vol 6 (2) ◽  
pp. 00299-2019
Author(s):  
David C. Currow ◽  
Miriam J. Johnson ◽  
Allan Pollack ◽  
Diana H. Ferreira ◽  
Slavica Kochovska ◽  
...  
Keyword(s):  
General Practice ◽  
Clinical Care ◽  
Cross Sectional Study ◽  
Prescribing Patterns ◽  
Pain Patient ◽  
Chronic Obstructive ◽  
Cross Sectional ◽  
Opioid Prescription ◽  
Obstructive Pulmonary Disease ◽  
Health Database

Chronic breathlessness is a disabling syndrome, prevalent in people with advanced chronic obstructive pulmonary disease (COPD). Regular, low-dose, oral sustained-release morphine is approved in Australia to reduce symptomatic chronic breathlessness. We aimed to determine the current prescribing patterns of opioids for chronic breathlessness in COPD in Australian general practice and to define any associated patient and practitioner characteristics.Five years (2011 to 2016) of the Bettering the Evaluation and Care of Health database, an Australian national, continual, cross-sectional study of clinical care in general practice were used. The database included 100 consecutive clinical encounters from almost 1000 general practitioners annually (n=488 100 encounters). Descriptive analyses with subsequent regression models were generated.Breathlessness as a patient-defined reason for encounter was identified in 621 of 4522 encounters where COPD was managed. Opioids were prescribed in 309 of 4522 encounters where COPD was managed (6.8%; (95% CI) 6.1–7.6), of which only 17 were prescribed for breathlessness, and the rest for other conditions almost entirely related to pain. Patient age (45–64 years versus age 80+ years, OR 1.68; 1.19–2.36), Commonwealth Concession Card holders (OR 1.70; 1.23–2.34) and socioeconomic disadvantage (OR 1.30; 1.01–1.68) were associated with increased likelihood of opioid prescription at COPD encounters. The rate of opioid prescriptions rose over the 5 years of study.In primary care encounters for COPD, opioids were prescribed in 6.8% of cases, but almost never for breathlessness. These data create a baseline against which to compare changes in prescribing as the treatment of chronic breathlessness evolves.

scholarly journals Targeting Cytokines as Evolving Treatment Strategies in Chronic Inflammatory Airway Diseases

2018 ◽  
Vol 19 (11) ◽  
pp. 3402 ◽  
Author(s):  
Jaleesa Garth ◽  
Jarrod Barnes ◽  
Stefanie Krick
Keyword(s):  
Clinical Trials ◽  
Allergic Asthma ◽  
Inflammatory Marker ◽  
Interleukin 1 ◽  
Treatment Strategies ◽  
Bronchial Epithelium ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Airway Diseases ◽  
Novel Treatment Strategies

Cytokines are key players in the initiation and propagation of inflammation in chronic inflammatory airway diseases such as chronic obstructive pulmonary disease (COPD), bronchiectasis and allergic asthma. This makes them attractive targets for specific novel anti-inflammatory treatment strategies. Recently, both interleukin-1 (IL-1) and IL-6 have been associated with negative health outcomes, mortality and a pro-inflammatory phenotype in COPD. IL-6 in COPD was shown to correlate negatively with lung function, and IL-1beta was induced by cigarette smoke in the bronchial epithelium, causing airway inflammation. Furthermore, IL-8 has been shown to be a pro-inflammatory marker in bronchiectasis, COPD and allergic asthma. Clinical trials using specific cytokine blockade therapies are currently emerging and have contributed to reduce exacerbations and steroid use in COPD. Here, we present a review of the current understanding of the roles of cytokines in the pathophysiology of chronic inflammatory airway diseases. Furthermore, outcomes of clinical trials in cytokine blockade as novel treatment strategies for selected patient populations with those diseases will be discussed.

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