Patient and public involvement (PPI) is increasingly embedded in stroke and aphasia participatory research, enhancing relevance and inclusivity. While the benefits of PPI are well-documented, the costs, both direct (eg, honoraria, travel, accessibility materials) and indirect (eg, time, administrative burden, emotional labour), remain poorly reported. This scoping review aims to (1) identify and categorise direct and indirect costs of PPI in stroke research, (2) examine how these costs are defined, reported or implied, (3) map cost-related barriers and facilitators and (4) expose evidence gaps to inform the Mapping the Economic and Social Tangible and Emotional Resources of Patient and Public Involvement (MASTER-PPI) framework.

Following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines, we will search Medline, PUBMED, Embase, CINAHL, APA PsycINFO, Scopus and Web of Science, as well as grey literature (NIHR INVOLVE, Horizon Europe, non-governmental organisation (NGO) reports). Eligible studies include those reporting or implying direct or indirect costs of PPI in stroke research. Two reviewers will independently screen and extract data, which will be synthesised descriptively and thematically. Findings will be aligned with the MASTER-PPI framework.

Ethical approval is not required. The findings will be disseminated through peer-reviewed journal publications, conference presentations, social media posts in lay language and policy briefs tailored for NGOs and funders.

This protocol is registered with the Open Science Framework (OSF) (https://doi.org/10.17605/OSF.IO/VM9ZU).

Recent advances in treatment and care have improved survival rates for children and young adults with severe blood disorders such as sickle cell disease (SCD), transfusion-dependent beta-thalassaemia (TDT) and acute leukaemia. However, their quality of life and reproductive and psychosocial outcomes are not yet well studied. For SCD and TDT, robust survival data are mainly limited to North America. Thus, there is a need to fill these knowledge gaps to guide improvements in care, address unmet clinical needs and rigorously assess the efficacy of emerging novel therapies.

This is an observational population-based mixed-methods study of individuals diagnosed with SCD, TDT or acute leukaemia when under the age of 18 in England, involving a data linkage component and a patient-reported outcomes measures survey. Data linkage-eligible participants will be identified from national and regional databases, including the Hospital Episode Statistics, Yorkshire Specialist Register of Cancer in Children & Young People and the National Congenital Anomaly and Rare Diseases Registration Service. Data linkage will be processed within the NHS England and the University of Leeds’ secure, trusted research environments. Data will be accessed without consent under section 251 and approval by the confidentiality advisory group. It will assess survival rates for SCD and TDT as well as clinical, educational and mental health outcomes for SCD, TDT and acute leukaemia diagnosed in childhood.

Survey-eligible participants for SCD, TDT and acute leukaemia cohorts will be checked for their suitability to participate by the North of England clinical care teams. An NHS-approved survey provider will facilitate data checks with the NHS National Data Opt-Out Service. Consent is required for participation in the survey and for subsequent data linkage to existing databases. Surveys are conducted in various formats (online, paper and phone), with reminders sent after 21 days. The survey will assess quality of life and psychosocial and reproductive outcomes. Participants can withdraw at any time, and support is available via telephone helplines.

The study has received ethical and information governance approval from the Health Research Authority (Reference 24/YH/0186) and the Confidentiality Advisory Group (CAG 24/CAG/0138) to process identifiable data without consent. Study results will be available to patients, physicians, researchers, stakeholders and others through open-access publishing, results sharing via media platforms and presentations at conferences and meetings.

The carbon footprint of end-to-end healthcare deliveries by the National Health Service in England totalled 25.0 megatons of carbon dioxide equivalent (CO₂e) in 2019. Optimal and sustainable healthcare can lead to better health outcomes as well as a lower environmental footprint.

To evaluate the potential impact of prevention and effective management of type 2 diabetes mellitus (T2DM) in adults on both the clinical outcomes and greenhouse gas (GHG) emissions in the UK healthcare setting.

We incorporated an environmental module into the existing IQVIA core diabetes model to estimate the impact of improving clinical outcomes on GHG emissions over a lifetime horizon. We assessed two hypothetical scenarios: (1) preventing progression from pre-diabetes to T2DM through diet and exercise versus no intervention and natural disease progression to T2DM; and (2) well-controlled T2DM using interventions with clinical benefit on glycosylated haemoglobin (HbA1c), and renal and cardiovascular outcomes versus uncontrolled T2DM.

Preventing progression to T2DM led to 6.357 additional undiscounted life years and 67% less kg CO₂e emissions compared with subsequent natural progression to T2DM for a person with pre-diabetes over a lifetime (emissions of 9586 kg CO₂e over 37.115 years vs 28 716 kg CO₂e over 30.758 years, respectively). Well-controlled T2DM led to 1.947 additional undiscounted life years and 21% less kg CO₂e emissions per patient over a lifetime compared with uncontrolled T2DM (emissions of 14 545 kg CO₂e over 22.772 years vs 18 516 kg CO₂e over 20.825 years, respectively). In both scenarios, the GHG emission savings were primarily due to reduced emissions related to avoidance of treating complications of T2DM including cardiovascular, renal and eye diseases.

Effective prevention and management of T2DM through implementation of evidence-based clinical guidelines can improve patient outcomes while reducing the healthcare-related environmental impacts.

Osteoporosis represents a growing public health concern in the Middle East and North Africa (MENA) region, where ageing populations and limited healthcare access contribute to high fracture rates and poor treatment adherence. Despite the existence of clinical practice guidelines, these often lack integration of stakeholder perspectives such as those of patients, healthcare providers, insurers and systems. Understanding knowledge, attitudes and practices (KAP) related to osteoporosis is essential to inform inclusive, culturally relevant strategies for prevention and management. This systematic review aims to evaluate the knowledge, attitudes (preferences) and practices (behaviours) of key stakeholders, including adults aged 50 years and older and healthcare providers, regarding the prevention, diagnosis and treatment of osteoporosis in the MENA region.

Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols guidelines, we conducted comprehensive searches of MEDLINE and Embase for studies published from January 1994 to January 2025. Two reviewers independently screened titles, abstracts and full texts in duplicate. Title/abstract and full-text screening were completed by September 2025. Data extraction will begin in October 2025 and will be performed in duplicate using piloted standardised forms. Risk of bias assessment and data synthesis will follow, using validated design-specific tools and a narrative approach guided by the Synthesis Without Meta-analysis framework. The review was initiated in June 2025, and completion of analysis and manuscript preparation is anticipated in June 2026.

This review synthesises data from publicly available literature and does not involve primary data collection with human participants; therefore, ethics approval is not required. Findings will be disseminated through peer-reviewed publications, conference presentations and deposition of study materials on the Open Science Framework.

This protocol is registered on the Open Science Framework.

Poor chest health is the leading cause of early mortality in children with cerebral palsy (CP). It is also the most common reason to seek healthcare, accruing significant costs and reducing quality-of-life for children and families. Clinical trials examining chest health interventions in CP are characterised by inconsistent outcome measures, limiting the capacity for evidence synthesis to inform clinical application. The study aims to develop a core outcome set (COS) and related measurement instruments to assess, monitor and evaluate chest health in children with CP, both in research and routine clinical practice. The COS will reflect the views of children, young people, parent/carers, clinicians and researchers, emphasising under-represented groups in research and those at risk of poorer chest health.

A 3-phase methodology will be conducted in line with the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. (1) Candidate outcomes will be identified through a qualitative evidence synthesis and interviews with key stakeholders. Findings will be mapped to COMET-taxonomy, generating a list of candidate outcomes. (2) An international e-Delphi survey will invite stakeholders to rate the importance of each outcome, followed by a consensus meeting to ratify the COS. (3) A structured review, guided by health measurement taxonomy, will evaluate relevant instruments, with a final meeting to agree on recommended measures for each COS domain.

Ethical approval was provided by the University of Plymouth Research Ethics Committee for the qualitative interview study (ID5116), e-Delphi study and consensus meeting (ID5636). Study findings will be published open access in a peer-reviewed journal and presented at relevant national and international conferences.

COMET registration: 2590 (https://www.comet-initiative.org/Studies/Details/2590)

CRD42024562735.

Severe perinatal asphyxia at term or near term remains a critical public health issue, associated with high risks of neonatal death and hypoxic-ischaemic encephalopathy (HIE). Despite improved clinical guidelines, suboptimal care persists in many cases, and previous audits have demonstrated that up to 50% of asphyxia cases could be associated with suboptimal care. OptiNeoCare is a French study which aims to assess the prevalence and determinants of suboptimal obstetric and neonatal care and evaluate its potential impact on neonatal outcomes.

This prospective, population-based observational study will include newborns ≥36 weeks’ gestation with severe perinatal asphyxia across 12 French perinatal networks (213 maternity units). Inclusion criteria comprise neonatal death or moderate/severe HIE with confirmed biochemical markers of asphyxia. Data will be collected prospectively from labour wards, transport teams and neonatal intensive care units using an electronic case report form, and the in-situ team will be invited to complete a morbi-mortality review (MMR). Approximately 336 cases will be included over 12 months, with 25% randomly selected for confidential enquiry by two experts. The quality of care will be assessed based on a structured classification of medical errors (diagnostic, therapeutic, preventive and systemic) by a panel of experts including an obstetrician or midwife and a paediatrician. Root cause analysis will identify determinants of suboptimal care. A concordance analysis will compare findings from MMRs and confidential enquiries. Statistical analysis will include multivariable logistic regression to explore associations between care quality and neonatal outcomes.

Ethical approval was granted by the Ethics Committee for Research in Obstetrics and Gynaecology. Informed non-opposition is required from participants. Results will be shared with participating centres, healthcare professionals and through scientific dissemination.

ClinicalTrials.gov ID: NCT06322732.