HRB open research最新文献

Background: Recovery originated from the civil rights movement of the 1960s/70s. However, no universally accepted definition of recovery had been constructed until 1993 when William A. Anthony suggested that recovery involved living one's best life even with mental health difficulties. In 2011, Leamy et al. created CHIME [ Connectiveness, Hope, Identity, Meaning and purpose and Empowerment]. A concept that represents the key characteristics of recovery. It derived from a literature review into recovery from psychosis. Since 2011, the literature has examined these concepts individually and collectively to understand what they are in reality. However, few studies have investigated the internal mechanisms that causes a person to move from unwellness to recovery via CHIME. As such this proposed realist review will explore how and why the mechanisms within CHIME operate in individuals recovering from mental health challenges.

Methods: This review forms work package one of a PhD study into CHIME and mental health recovery in Ireland. It complies with relevant guidelines relating to realist reviews including Pawson et al's. updated methodology, which consists of six phases: 1) setting up the review advisory panel and constructing initial programme theories; 2) searching for evidence; 3) selecting and appraising evidence; 4) extracting data; 5) analysing and synthesising data; and 6) ethics and dissemination.

Discussion & implications for practice: This proposed review will address a gap in the literature on the mechanism involved in recovery from mental health challenges. Unlike other review types, a realist review is theory orientated, allowing one to answer this review question by exploring how, why, and through what circumstances individuals reach recovery through CHIME. This review will inform future work packages of this PhD study. The proposed review will be written up and submitted to a peer-reviewed journal. Dissemination outside academia will be considered.

Registration id: CRD420251038961.

Background: Cancer is a significant cause of morbidity, mortality, and economic loss in Ireland. It is important that cancer research funding is directed in accordance with the values of a wide variety of stakeholders, so as to ultimately deliver tangible benefits to cancer patients. The aim of this study is to achieve consensus among key stakeholders (including patients, caregivers, healthcare professionals, policymakers and academics) regarding research priorities in the area of early detection of symptomatic cancer in primary care in Ireland.

Methods: A research prioritisation exercise adapted from the James Lind Alliance (JLA) consensus framework will be used to enable all key stakeholders to identify and prioritise research questions. This involves the following stages: (1) setting up a steering group and priority setting partnership, (2) gathering potential research questions via an online survey, (3) processing, categorising, and summarising these research questions, (4) identifying the unanswered research questions, (5) determining the top 10 research priorities via a consensus workshop.

Results: The following outcomes will be reported: (1) a "Top 10" list of the most important research questions in early detection of symptomatic cancer in primary care; (2) a list of unanswered research questions which ranked outside of the Top 10; (3) a list of research questions which were proposed but considered to be already answered by a panel of academics working in the field.

Conclusions: The co-production of consensus derived research questions in early cancer detection will provide a platform for both funders and researchers to concentrate on the most significant issues to stakeholders, especially patients and their doctors.

Background: Stroke poses a significant burden globally, making economic evaluations important. However, differences in cost methodologies and data sources challenge the interpretability and comparability across studies. Additionally, stroke presents challenges related to memory recall, affecting the reliability of patient-reported outcomes. While previous reviews have identified variations in cost methodologies within stroke research, there is a lack of literature specifically examining the cost methods used in survey-based observational studies, particularly given the distinct complexities associated with stroke. This protocol outlines a scoping review to identify and examine the cost methodologies employed in stroke research, focusing on data collection approaches, measurement and valuation of cost components, and sources of cost information. The review will also document the limitations highlighted in the identified studies regarding the cost methods and their recommendations for future studies.

Methods: The JBI methodology will be used to develop this review. Articles will be sourced from Embase, PubMed, and Web of Science. The Population, Concept, and Context framework will guide the inclusion and exclusion criteria. Observational studies involving stroke patients or survivors aged 18 years and older that used surveys for data collection and incorporated a cost analysis component, and published in English within the last 20 years across all geographical regions will be considered. Articles will be entered into Covidence, where two reviewers will independently screen and extract/check data. A data collection template will guide the data extraction process for analysis and narrative synthesis. The Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews will guide the reporting.

Conclusion: This scoping review will examine the cost methodologies used in survey-based observational studies in stroke research. The findings may inform the cost methodologies employed in future observational studies in stroke using surveys as a data collection tool.

Introduction: The Advanced Practice Physiotherapy (APP)bmodel of care is implemented internationally, with notable variations in its application across different healthcare systems. Nonetheless, APP has been shown as a means of mitigating against emergency department (ED) crowding and reducing pressure on EDs. This protocol outlines the methods in conducting a scoping review to identify the extent of APP roles in urgent care and ED settings, their expertise levels, the profile of patients they treat and the components of care they provide.

Methods: This scoping review will be conducted in line with the Joanna Briggs Institute framework for scoping reviews. The Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for scoping reviews (PRISMA-ScR) will be used to guide the reporting of this review. This review will include published studies of any design that are focussed on APP assessment and/ or subsequent treatment in the ED or urgent care setting among adults. The electronic databases: Medline (Ovid), Pubmed, CINAHL Complete, EMBASE, Epistemonikos, Central Register of Controlled Trials in the Cochrane Library and Scopus, trial registries and grey literature databases will be searched. The reference list of included sources of evidence in the review will be searched for additional sources. The methodological quality of the studies will not be formally explored. Relevant data will be extracted from each article using a predefined data extraction form by two independent reviewers. Data synthesis will be derived from the 'PCC' framework (population, concept, and context).

Conclusions: This scoping review will serve to characterise the roles, responsibilities, levels of expertise and the specific components of care that APP offers in urgent and emergency care settings.

The Cancer Biobank collects, processes, stores and distributes biological specimens and associated data from consenting participants, under a joint data controllership agreement between the University of Galway and HSE West and North West. Working towards improved transparency and in line with the requirements of ISO 20387 Biobanking accreditation, the Cancer Biobank has supported clinical trials and translational research for over 20 years. The process of consent acquisition has evolved since the earliest samples (and data) were collected for research in 1998. With the introduction of GDPR (General Data Protection Regulation) in 2018, a consent declaration was sought from the Health Research Consent Declaration Committee (HRCDC) in 2019 to continue to store personal data on participants recruited to the Cancer Biobank when versions 1 and 2 of the consent documentation were in use (April 1998 - October 2008). This work outlines the process of clarifying which versions of consent forms were used to recruit participants from 1998-2025. The task of verifying consent documentation for 8,925 participants recruited to the Cancer Biobank between 1998 and 2025 required detailed manual checking, recording, and scanning of all paper and electronic consent forms. Among these participants, 65% had signed Cancer Biobank consent forms, 14% had other types of study-specific consent forms and 21% had no proof of consent on file. Consent auditing is essential in biobanking to safeguard participant data, to maintain regulatory compliance and ethical research standards and to sustain public confidence in the use of irreplaceable biological resources. Applying modern compliance standards to archival biobank records has involved navigating incomplete and incompatible consent records, evolving ethical norms, upgrading privacy protections, managing operational challenges and securing appropriate regulatory approval, namely a consent waiver. This complex environment requires adaptive governance strategies balancing legal, ethical and scientific priorities for responsible public interest biobanking.

Background: The Rapid Evidence Support System Assessment (RESSA) was developed by the Global Evidence Commission to evaluate evidence support systems that inform policy decisions. These systems are designed to contextualise existing evidence, guide decision-making, and generate new insights to inform action. As evidence-informed policymaking gains traction globally, it is essential to evaluate these systems' effectiveness. In Ireland, the Health Research Board, the Department of Health, Evidence Synthesis Ireland, Cochrane Ireland, and the Global Evidence Commission are collaborating to conduct a RESSA within the Department of Health. This process evaluation aims to assess the fidelity, acceptability, and experiences of stakeholders involved in the RESSA, providing insights for refining the methodology.

Methods: The process evaluation will employ a mixed methods approach, integrating both qualitative and quantitative data collection. It will evaluate the conduct of a RESSA within the Department of Health. Fidelity assessment will examine adherence to the RESSA protocol, while acceptability will be evaluated using the Theoretical Framework of Acceptability, focusing on key stakeholders' attitudes. An exploration of the experiences of participants, capturing both facilitators and barriers to the RESSA's success will also be conducted. Data analysis will involve thematic analysis and descriptive statistics, aiming to highlight the RESSA's methodological strengths and areas for improvement.

Conclusions: This evaluation is expected to provide critical insights into the strengths and limitations of the RESSA methodology, with implications for evidence-informed policymaking. Findings will offer recommendations to enhance the robustness and applicability of the RESSA in Ireland and beyond. Dissemination will include academic publications and reports, contributing to the broader understanding of effective evidence support systems. This process evaluation aims to inform future RESSAs and strengthen the evidence support framework, ensuring better-informed policy decisions at local, national, and international levels.

Introduction: Dementia remains incurable, and treatment trials are typically conducted after the symptoms manifest, potentially too late in the disease process to alter its course. Thus, it is essential to identify and implement cost-effective strategies targeting individuals who have not yet been formally diagnosed with dementia. This review aims to scrutinise emerging evidence and present a comprehensive summary of cost-effectiveness estimates of all strategies targeting the pre-diagnosis dementia populations.

Method and analysis: A systematic search will be conducted across six electronic databases. All articles will be assessed against pre-defined eligibility criteria through title and abstract screening, and full-text screening phases. Data from the included articles will be extracted using a standardized template. A newly established framework based on the CHEERS 2022 checklist will be applied to assess the reporting quality of the included articles. The entire review process, from screening to data extraction and quality assessment, will be a dual process conducted by two reviewers. Disagreements will be resolved by a third senior reviewer. The extracted data will be synthesised and presented in tables and figures.

Conclusion: This systematic review will present evidence of cost-effectiveness, along with the strengths and limitations of the existing literature. These findings aim to identify existing gaps, thereby informing and guiding the design of future studies in this domain.

Ethics and dissemination: Since this is a systematic review protocol, ethical approval is not required. The results will be published in a peer-reviewed journal, with both raw and summarised data shared through the journal or other open platforms.

Systematic review registration: PROSPERO - CRD42024521521.

Background: In paediatric palliative care (PPC) research, meaningful engagement of children and young people (CYP) remains underdeveloped. Despite widespread endorsement of patient and public involvement (PPI) for its ability to enhance research relevance, ethics, and overall impact, current studies provide limited insight into how CYP are involved - specifically, the types, levels (e.g., consultation, collaboration, child-led), and stages (from priority setting to dissemination). This scoping review aims to systematically map existing literature on the involvement of CYP (aged 4-24 years) as active PPI contributors in PPC research. We will identify and categorize reported outcomes and impacts, explore ethical, practical, and emotional considerations, and determine the key factors that enable or hinder meaningful youth participation.

Methods: The scoping review will adhere to the Joanna Briggs Institute (JBI) methodology. A comprehensive search will be conducted across Embase, CINAHL, PubMed, Scopus, and the Cochrane Library. The search will identify English-language empirical and methodological studies detailing CYP involvement at any stage of the research cycle within PPC. Two independent reviewers will screen titles, abstracts, and full texts, with a third reviewer resolving any discrepancies. Extracted data will be descriptively mapped using a structured extraction table.

Conclusion: This scoping review will provide a comprehensive synthesis of CYP involvement as PPI contributors in PPC research. It will illuminate effective engagement practices, highlight common challenges, and identify critical knowledge gaps. The insights generated from this review will inform the development of more inclusive, ethically grounded, and developmentally appropriate models for involving children and young people as true partners in future palliative care research.

Background: People living with cystic fibrosis (PwCF) have increased energy requirements. However, in recent years concerns have emerged regarding the 'cystic fibrosis (CF) diet' in terms of reliance on energy-dense, nutrient poor foods, which tend to be higher in saturated fat, sugar, and salt. These foods lack essential nutrients and are aetiologically linked with diet-related chronic diseases. The aim is to explore habitual dietary intakes in PwCF and (i) assess adherence to CF dietary guidelines and population specific healthy eating guidelines; (ii) derive a diet quality score and the inflammatory potential for the average diet consumed by PwCF and assess associations with patient reported outcome measures; (iii) assess drivers for current consumption patterns and enablers and barriers to eating a healthy diet.

Methods: The aim is to recruit between 70-100 PwCF. A mixed methods study will be performed. Using three-day food diaries and food frequency questionnaires, aims (i) and (ii) will be addressed. The Diet Quality Index -International and Healthy Eating Index-2020 (HEI-2020) will derive diet quality scores. The Dietary Inflammatory Index (DII®) will ascertain inflammatory potential of the diet. Validated questionnaires will be used to report health related quality of life measures. Online focus groups and semi-structured interview with PwCF will address aim (iii).

Conclusions: It is timely to revise dietary priorities and targets for CF. However, a greater understanding of what adults with CF currently consume and what they require in terms of nutrition and dietary guidance into the future is needed. In doing so, this research will help to clarify nutrition priorities and simplify the dietary aspects of CF treatment, thereby supporting adherence.

Introduction: The COVID-19 pandemic caused by the SARS-CoV-2 virus changed the global landscape of clinical trials; changes in staffing, clinical priorities and recruitment challenges led to the delay or termination of many clinical trials. The Early Metformin in Gestational Diabetes (EMERGE) trial was completed despite COVID-19 and institutional computer network attacks (CNAs).

Methods: Here we outline the challenges encountered and the solutions employed to continue the active recruitment of a potentially high risk patient cohort during the Covid-19 pandemic and detail the techniques adapted to enable recruitment, adverse event reporting and lab reporting during two critical computer network attacks. We present our solutions from both the site and sponsor perspective.

Results: COVID-19 and the computer network attacks presented many challenges for the clinical trial site and Sponsor including staff shortages, remote working, deferred recruitment, changes in the diagnostic pathway for gestational diabetes mellitus and pivoting to remote working and telemedicine. The first CNA impeded clinical and laboratory systems, impacting recruitment and follow up. The second CNA delayed access to the Clinical Data Management System. Solutions employed included telemedicine, videoconferencing, shortened in-person reviews, contact tracing, COVID-19 risk mitigations, paper-based back-up systems and vigorous data integrity checks.

Conclusion: Overcoming the multiple challenges posed by COVID-19 and computer network attacks required rapid re-organisation, teamwork and flexibility from staff and Sponsor. The use of both digital solutions and paper-based records highlighted the importance of rapid innovation and comprehensive protocol planning.