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 ◽  
...  

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.

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 180-192 ◽  
Author(s):  
James D. Chalmers ◽  
Megan Crichton ◽  
Pieter C. Goeminne ◽  
Michael R. Loebinger ◽  
Charles Haworth ◽  
...  

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


2020 ◽  
Author(s):  
Rachael Davis ◽  
Lewis Montgomery ◽  
Hugh Rabagliati ◽  
Antonella Sorace ◽  
Sue Fletcher-Watson

This article examines the ways in which bilingualism influences social and cognitive development and identifies intersections between corresponding aspects of autism, to inform future research directions. Three key domains are identified: social cognition; executive functions; and social-cultural factors. In each case we describe the evidence for the impact of bilingualism in typical development and map this onto what is known about the domain in autism. We examine the methodological quality of the existing literature to make recommendations for future approaches. Results suggest a dearth of high-quality research and lack of consensus. Research priorities include the need for innovative designs to explore potential impacts of bilingualism in order to increase the validity of the evidence base for caregivers and professionals.


2020 ◽  
Author(s):  
Ana Paula Beck da Silva Etges ◽  
Carisi Anne Polanczyk ◽  
Richard D. Urman

Abstract Background: This Consensus Statement introduces a standardized framework, in a checklist format, to support future development and report of TDABC studies in healthcare, and to encourage their reproducibility. Additionally, it establishes the first formal networking of TDABC researchers through the creation of the TDABC for Health Care Consortium.Methods: A consensus group of researchers reviewed the most relevant TDABC studies available in Medline and Scopus databases to identify the initial elements of the checklist. Using a Focus Group process, each element received a recommendation regarding where in the scientific article section it should be placed and whether the element was required or suggested. A questionnaire was circulated with expert researchers in the field to provide additional recommendations regarding the content of the checklist and the strength of recommendation for each included element. Results: The TDABC standardized framework includes 32 elements, provides recommendations where in the scientific article to include each element, and the strength of each recommendation. All 32 elements were validated, with 21 elements classified as mandatory and 11 as suggested but not mandatory. Conclusions: This is the first standardized framework to support the development and reporting of TDABC research in healthcare and to stablish a community of experts in TDABC methodology. We expect that it can contribute to scale strategies that would result in cost-savings outcomes and in value-oriented strategies that can be adopted in healthcare systems and institutions.


2020 ◽  
Vol 38 (10) ◽  
pp. 1081 ◽  
Author(s):  
Merry Jennifer Markham ◽  
Kerri Wachter ◽  
Neeraj Agarwal ◽  
Monica M. Bertagnolli ◽  
Susan Marina Chang ◽  
...  

Each year Clinical Cancer Advances: ASCO’s Annual Report on Progress Against Cancer highlights the most important clinical research advances of the past year, including the Advance of the Year, and identifies priority areas where ASCO believes research efforts should be focused moving forward. In 2020, ASCO names the Refinement of Surgical Treatment of Cancer as the Advance of the Year. Years of progress in developing new systemic cancer therapies has not only improved patient survival and quality of life but is now transforming surgical approaches to cancer treatment. The emergence of novel systemic therapies combined in new and better ways is significantly changing the role of cancer surgery. ASCO’s selection of Refinement of Surgical Treatment of Cancer as the 2020 Advance of the Year recognizes recent strides seen in the effectiveness of these treatments in reducing the amount of surgery, and even the need for it, while increasing the number of patients who can undergo surgery when needed. Other advances highlighted in the report include progress in cancer prevention, molecular diagnostics, and cancer treatment—surgery, radiotherapy, combination therapy, immunotherapy, and other types of therapies. The report also features ASCO's 2020 list of Research Priorities to Accelerate Progress Against Cancer. These priorities represent promising areas of research that have the potential to significantly improve the knowledge base for clinical decision-making and address vital unmet needs in cancer care. A MESSAGE FROM ASCO’S PRESIDENT Shortly before I was elected President of ASCO, I attended the 65th birthday party of a current patient. She had been diagnosed 10 years earlier with metastatic breast cancer and hadn’t been sure she wanted to move forward with further treatment. With encouragement, she elected to participate in a clinical trial of an investigational drug that is now widely used to treat breast cancer. Happily, here we were, celebrating with her now-married daughters, their husbands, and three beautiful grandchildren, ages 2, 4, and 8. Such is the importance of clinical trials and promising new therapies. Clinical research is about saving and improving the lives of individuals with cancer. It’s a continuing story that builds on the efforts of untold numbers of researchers, clinicians, caregivers, and patients. ASCO’s Clinical Cancer Advances report tells part of this story, sharing the most transformative research of the past year. The report also includes our latest thinking on the most urgent research priorities in oncology. ASCO’s 2020 Advance of the Year—Refinement of Surgical Treatment of Cancer—highlights how progress drives more progress. Surgery has played a fundamental role in cancer treatment. It was the only treatment available for many cancers until the advent of radiation and chemotherapy. The explosion in systemic therapies since then has resulted in significant changes to when and how surgery is performed to treat cancer. In this report, we explore how treatment successes have led to less invasive approaches for advanced melanoma, reduced the need for surgery in renal cell carcinoma, and increased the number of patients with pancreatic cancer who can undergo surgery. Many research advances are made possible by federal funding. With the number of new US cancer cases set to rise by roughly a third over the next decade, continued investment in research at the national level is crucial to continuing critical progress in the prevention, screening, diagnosis, and treatment of cancer. While clinical research has translated to longer survival and better quality of life for many patients with cancer, we can’t rest on our laurels. With ASCO’s Research Priorities to Accelerate Progress Against Cancer, introduced last year and updated this year, we’ve identified the critical gaps in cancer prevention and care that we believe to be most pressing. These priorities are intended to guide the direction of research and speed progress. Of course, the effectiveness or number of new treatments is meaningless if patients don’t have access to them. High-quality cancer care, including clinical trials, is out of reach for too many patients. Creating an infrastructure to support patients is a critical part of the equation, as is creating connections between clinical practices and research programs. We have much work to do before everyone with cancer has equal access to the best treatments and the opportunity to participate in research. I know that ASCO and the cancer community are up for this challenge. Sincerely, Howard A. “Skip” Burris III, MD, FACP, FASCO ASCO President, 2019-2020


2019 ◽  
Vol 18 (1) ◽  
pp. e2081
Author(s):  
S. Rossi ◽  
C. Blick ◽  
C. Handforth ◽  
J. Brown ◽  
G. Stewart

2021 ◽  
Vol 108 (Supplement_7) ◽  
Author(s):  
Luke McElroy ◽  
J McGillivray ◽  
Michael Wilson

Abstract Aims Delphi methodology can be used to develop consensus opinion amongst a group of stakeholders. This can be used to prioritise clinically relevant, patient centred research questions to guide future funding allocations. The aim of our study was to identify key future research priorities pertaining to the management of major trauma in the UK. Methods A three-phased modified Delphi process was undertaken. Phase 1 involved the submission of research questions by members of the trauma community using an online survey (Phase 1). Phases 2 and 3 involved two consecutive rounds of prioritisation after questions were subdivided into 6 subcategories: Brain Injury, Rehabilitation, Trauma in Older People, Prehospital, Interventional, and Miscellaneous (Phases 2 and 3). Cut-off points were agreed by consensus among the steering subcommittees. This established a final prioritised list of research questions. Results 201 questions across all were submitted by 65 stakeholders in phase 1. After analysis and with consensus achieved, 186 questions were taken forward for prioritisation in phase 2 with 114 included in phase 3. 56 prioritised major trauma research questions across the 6 categories were identified with a clear focus on long-term patient outcomes. Conclusions Consensus from within the major trauma community has identified 56 key research questions across 6 categories. Dissemination of these questions to funding bodies to allow for the development of high-quality research is now required. There is a clear indication for targeted multi-centric multi-disciplinary research in major trauma.


2020 ◽  
Author(s):  
Ana Paula Beck da Silva Etges ◽  
Carisi Anne Polanczyk ◽  
Richard D. Urman

Abstract Background: This Consensus Statement introduces a standardized framework, in a checklist format, to support future development and report of TDABC studies in healthcare, and to encourage their reproducibility. Additionally, it establishes the first formal networking of TDABC researchers through the creation of the TDABC for Health Care Consortium.Methods: A consensus group of researchers reviewed the most relevant TDABC studies available in Medline and Scopus databases to identify the initial elements of the checklist. Using a Focus Group process, each element received a recommendation regarding where in the scientific article section it should be placed and whether the element was required or suggested. A questionnaire was circulated with expert researchers in the field to provide additional recommendations regarding the content of the checklist and the strength of recommendation for each included element. Results: The TDABC standardized framework includes 32 elements, provides recommendations where in the scientific article to include each element, and the strength of each recommendation. All 32 elements were validated, with 21 elements classified as mandatory and 11 as suggested but not mandatory. Conclusions: This is the first standardized framework to support the development and reporting of TDABC research in healthcare and to stablish a community of experts in TDABC methodology. We expect that it can contribute to scale strategies that would result in cost-savings outcomes and in value-oriented strategies that can be adopted in healthcare systems and institutions.


2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Ana Paula Beck da Silva Etges ◽  
Carisi Anne Polanczyk ◽  
Richard D. Urman

Abstract Background This Consensus Statement introduces a standardized framework, in a checklist format, to support future development and reporting of TDABC studies in healthcare, and to encourage their reproducibility. Additionally, it establishes the first formal networking of TDABC researchers through the creation of the TDABC in Healthcare Consortium. Methods A consensus group of researchers reviewed the most relevant TDABC studies available in Medline and Scopus databases to identify the initial elements of the checklist. Using a Focus Group process, each element received a recommendation regarding where in the scientific article section it should be placed and whether the element was required or suggested. A questionnaire was circulated with expert researchers in the field to provide additional recommendations regarding the content of the checklist and the strength of recommendation for each included element. Results The TDABC standardized framework includes 32 elements, provides recommendations where in the scientific article to include each element, and comments on the strength of each recommendation. All 32 elements were validated, with 21 elements classified as mandatory and 11 as suggested but not mandatory. Conclusions This is the first standardized framework to support the development and reporting of TDABC research in healthcare and to stablish a community of experts in TDABC methodology. We expect that it can contribute to scale strategies that would result in cost-savings outcomes and in value-oriented strategies that can be adopted in healthcare systems and institutions.


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