Planning Clinical Research and Clinical Care for Different Rates of Glaucoma Progression

2021 ◽  
Author(s):  
Douglas R. Anderson ◽  
Elizabeth Anne Vanner
Keyword(s):  
Clinical Research ◽  
Clinical Care ◽  
Glaucoma Progression

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.

OHSU Employees’ Opinions of Receipt of Clinical Care and Participation in Clinical Research at Place of Employment

2021 ◽  
Author(s):  
Morinne Osborne, B.S. ◽  
Emily Boniface, M.P.H. ◽  
Marcella Messerle Forbes, N.P. ◽  
Jeffrey Jensen
Keyword(s):  
Clinical Research ◽  
Clinical Care

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 The Treatment of Brain AVMs Study (TOBAS): an all-inclusive framework to integrate clinical care and research

2018 ◽  
Vol 128 (6) ◽  
pp. 1823-1829 ◽  
Author(s):  
Elsa Magro ◽  
Jean-Christophe Gentric ◽  
André Lima Batista ◽  
Marc Kotowski ◽  
Chiraz Chaalala ◽  
...  
Keyword(s):  
Clinical Research ◽  
Clinical Judgment ◽  
Clinical Care ◽  
Clinical Trial Registration ◽  
Treatment Allocation ◽  
Patient Allocation ◽  
Test Study ◽  
Brain Avms ◽  
Management Groups

OBJECTIVEThe management of brain arteriovenous malformations (bAVMs) remains controversial. The Treatment of Brain AVMs Study (TOBAS) was designed to manage patients with bAVMs within a clinical research framework. The objective of this study was to study trial feasibility, recruitment rates, patient allocation to the various management groups, and compliance with treatment allocation.METHODSTOBAS combines two randomized care trials (RCTs) and a registry. Designed to be all-inclusive, the study offers randomized allocation of interventional versus conservative management to patients eligible for both options (first RCT), a second RCT testing the role of preembolization as an adjunct to surgery or radiotherapy, and a registry of patients managed using clinical judgment alone. The primary outcome of the first RCT is death from any cause or disabling stroke (modified Rankin Scale score > 2) at 10 years. A pilot phase was initiated at one center to test study feasibility, record the number and characteristics of patients enrolled in the RCTs, and estimate the frequency of crossovers.RESULTSAll patients discussed at the multidisciplinary bAVM committee between June 2014 and June 2016 (n = 107) were recruited into the study; 46 in the randomized trials (23 in the first RCT with 21 unruptured bAVMs, 40 in the second RCT with 17 unruptured bAVMs, and 17 in both RCTs), and 61 patients in the registry. Three patients crossed over from surgery to observation (first RCT).CONCLUSIONSClinical research was successfully integrated with normal practice using TOBAS. Recruitment rates in a single center are encouraging. Whether the trial will provide meaningful results depends on the recruitment of a sufficient number of participating centers.Clinical trial registration no.: NCT02098252 (clinicaltrials.gov)

scholarly journals Reflections on the TEAM Trial: Why Clinical Care and Research Should be Reconciled

2011 ◽  
Vol 38 (2) ◽  
pp. 198-202 ◽  
Author(s):  
Jean Raymond
Keyword(s):  
Clinical Research ◽  
Intracranial Aneurysms ◽  
Potential Benefit ◽  
Clinical Care ◽  
Major Change ◽  
Management Team ◽  
Endovascular Management ◽  
Public Agencies ◽  
Research And Practice ◽  
Unruptured Intracranial Aneurysms

The current clinical and research environment is one that renders any true enquiry into the value of commonly performed surgical acts practically impossible. Drawing from the recent failure of Trial on Endovascular Aneurysm Management (TEAM), a trial on the endovascular management of unruptured intracranial aneurysms, I attempt to identify some principles that sustain the current ways of doing clinical research that have paradoxically become major obstacles to trials that aim to assess the potential benefit or harm due to interventions as currently practiced. Clinical research and practice must coalesce into “clinical care trials” if we are to provide patients with optimal, prudent care in the context of uncertainty. This may require a major change in the mentalities of clinicians, scientists, and patients alike, and the adoption of novel strategies for public agencies to support the integration of clinical research and care.

scholarly journals Therapeutic appropriation: a new concept in the ethics of clinical research

2016 ◽  
Vol 42 (12) ◽  
pp. 805-808 ◽  
Author(s):  
Rosalind McDougall ◽  
Dominique Martin ◽  
Lynn Gillam ◽  
Nina Hallowell ◽  
Alison Brookes ◽  
...  
Keyword(s):  
Primary Care ◽  
Clinical Research ◽  
Clinical Care ◽  
Research Participation ◽  
Therapeutic Benefit ◽  
Therapeutic Misconception ◽  
Ethical Problems ◽  
Ethical Concerns ◽  
Research Participants ◽  
Therapeutic Needs

Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants' assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of ‘misunderstandings’ that research participants may have. In this paper, we describe a new concept—therapeutic appropriation. Therapeutic appropriation occurs when patients, or clinicians, actively reframe research participation as an opportunity to enhance patients' clinical care, while simultaneously acknowledging the generalised research aims. To illustrate the concept of therapeutic appropriation, we draw on data from an interview study which we conducted to investigate the experiences of patients and general practitioners involved in clinical trials in primary care. We argue that therapeutic appropriation has two key elements: comprehension that the research project is not necessarily aiming to benefit participants and the deliberate use of incidental features of the research for personal therapeutic benefit of various kinds. We conclude that therapeutic appropriation is a useful concept that refines understanding of potential ethical problems in clinical research, and points to strategies to address them.

The evolution of biomarkers in rheumatoid arthritis: From clinical research to clinical care

2008 ◽  
Vol 8 (11) ◽  
pp. 1773-1785 ◽  
Author(s):  
Theodorus van den Broek ◽  
John RP Tesser ◽  
Salvatore Albani
Keyword(s):  
Rheumatoid Arthritis ◽  
Clinical Research ◽  
Clinical Care
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