Unpacking the ‘black box of horrendousness’: a qualitative exploration of the barriers and facilitators to conducting trials involving adults lacking capacity to consent

Development of a decision support intervention for family members of adults who lack capacity to consent to trials

(2021) Victoria Shepherd et al.   BMC Medical Informatics and Decision Making

Excess mortality for care home residents during the first 23 weeks of the COVID-19 pandemic in England: a national cohort study

(2021) Marcello Morciano et al.   BMC Medicine

Effectiveness of participant recruitment strategies for critical care trials: A systematic review and narrative synthesis

(2021) Timia Raven-Gregg et al.   Clinical Trials

Dementia is an age‐independent risk factor for severity and death in COVID‐19 inpatients

(2021) Ana C. Tahira et al.   Alzheimers & Dementia

The ethics of patient and public involvement across the research process: towards partnership with people with aphasia

(2021) Deborah Hersh et al.   APHASIOLOGY

Coronavirus disease 2019 and clinical research in U.S. nursing homes

(2021) Charlene C. Quinn et al.   JOURNAL OF THE AMERICAN GERIATRICS SOCIETY

The cost of community research—recruiting community-dwelling participants to a feasibility primary care cluster randomised controlled trial

(2021) Nicola Harrison et al.   Trials

Exploring the inclusion of under-served groups in trials methodology research: an example from ethnic minority populations’ views on deferred consent

(2021) Timia Raven-Gregg et al.   Trials

Strategies to enhance recruitment and consent to intensive care studies: a qualitative study with researchers and patient–public involvement contributors

(2021) Katie Paddock et al.   BMJ Open

Risks of covid-19 hospital admission and death for people with learning disability: population based cohort study using the OpenSAFELY platform

(2021) Elizabeth J Williamson et al.   BMJ-British Medical Journal

Exclusion criterion: learning disability

(2020) Samuel W Spaul et al.   LANCET

An under-represented and underserved population in trials: methodological, structural, and systemic barriers to the inclusion of adults lacking capacity to consent

(2020) Victoria Shepherd   Trials

Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement)

(2020) C. J. Evans et al.   BMC Medicine

Advances and challenges in conducting ethical trials involving populations lacking capacity to consent: A decade in review

(2020) Victoria Shepherd   Contemporary Clinical Trials

Developing a roadmap to improve trial delivery for under-served groups: results from a UK multi-stakeholder process

(2020) Miles D. Witham et al.   Trials

The Exclusion of Older Persons From Vaccine and Treatment Trials for Coronavirus Disease 2019—Missing the Target

(2020) Benjamin K. I. Helfand et al.   JAMA Internal Medicine

Research involving adults lacking capacity to consent: a content analysis of participant information sheets for consultees and legal representatives in England and Wales

(2019) Victoria Shepherd et al.   Trials

‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

(2019) Victoria Shepherd et al.   AGE AND AGEING

Protection by exclusion? The (lack of) inclusion of adults who lack capacity to consent to research in clinical trials in the UK

(2019) Victoria Shepherd et al.   Trials

Using a Delphi survey to gain an international consensus on the challenges of conducting trials with adults with intellectual disabilities

(2019) Peter Mulhall et al.   Clinical Trials

Healthcare professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales: a national survey

(2018) Victoria Shepherd et al.   JOURNAL OF MEDICAL ETHICS

Trial Forge Guidance 1: what is a Study Within A Trial (SWAT)?

(2018) Shaun Treweek et al.   Trials

Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis

(2018) Joanna C Crocker et al.   BMJ-British Medical Journal

Involving the public in mental health and learning disability research: Can we, should we, do we?

(2017) C. Paul et al.   Journal of Psychiatric and Mental Health Nursing

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies

(2016) Dianne Rios et al.   AMERICAN JOURNAL OF PUBLIC HEALTH

Leveraging the lived experience of surrogate decision makers of the seriously ill to develop a decision support intervention

(2016) Ronald L. Hickman et al.   APPLIED NURSING RESEARCH

Research involving adults lacking capacity to consent: the impact of research regulation on ‘evidence biased’ medicine

(2016) Victoria Shepherd   BMC Medical Ethics

Factors influencing recruitment to research: qualitative study of the experiences and perceptions of research teams

(2014) Lisa Newington et al.   BMC Medical Research Methodology

Systematic review on the inclusion of patients with cognitive impairment in hip fracture trials: a missed opportunity?

(2014) Simran Mundi et al.   CANADIAN JOURNAL OF SURGERY

Guide to the design and review of emergency research when it is proposed that consent and consultation be waived: Table 1

(2014) Hugh Davies et al.   EMERGENCY MEDICINE JOURNAL

Probiotics for Antibiotic-Associated Diarrhoea (PAAD): a prospective observational study of antibiotic-associated diarrhoea (including Clostridium difficile-associated diarrhoea) in care homes

(2014) Kerenza Hood et al.   HEALTH TECHNOLOGY ASSESSMENT

People with Aphasia: Capacity to Consent, Research Participation and Intervention Inequalities

(2012) Marian C. Brady et al.   International Journal of Stroke

The Disappearing Subject: Exclusion of People with Cognitive Impairment and Dementia from Geriatrics Research

(2012) Janelle S. Taylor et al.   JOURNAL OF THE AMERICAN GERIATRICS SOCIETY

Disparate Inclusion of Older Adults in Clinical Trials: Priorities and Opportunities for Policy and Practice Change

(2010) Angelica P. Herrera et al.   AMERICAN JOURNAL OF PUBLIC HEALTH

Challenges to Effective Research in Acute Trauma Resuscitation

(2010) John B. Holcomb et al.   SHOCK

Research involving adults who lack capacity: how have research ethics committees interpreted the requirements?

(2009) M Dixon-Woods et al.   JOURNAL OF MEDICAL ETHICS