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

Age, sex, race and ethnicity representativeness of randomised controlled trials in peri‐operative medicine

(2020) W. A. Lindsay et al.   ANAESTHESIA

Exclusion criterion: learning disability

(2020) Samuel W Spaul et al.   LANCET

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

(2020) Sarah Griffiths et al.   Trials

Handling of informed consent and patient inclusion in research with geriatric trauma patients – a matter of protection or disrespect?

(2019) Jana S Jensen et al.   Clinical Interventions in Aging

Inequity in rehabilitation interventions after hip fracture: a systematic review

(2019) K J Sheehan et al.   AGE AND AGEING

Methodological challenges in European ethics approvals for a genetic epidemiology study in critically ill patients: the GenOSept experience

(2019) Ascanio Tridente et al.   BMC Medical Ethics

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

From protectionism to inclusion: A New Zealand perspective on health-related research involving adults incapable of giving informed consent

(2018) Alison Douglass et al.   BIOETHICS

Measuring health-related quality of life of care home residents, comparison of self-report with staff proxy responses for EQ-5D-5L and HowRu: protocol for assessing proxy reliability in care home outcome testing

(2018) Adeela Usman et al.   BMJ Open

Inclusion and Exclusion Criteria of Clinical Trials for Insomnia

(2018) Hendrikje Huls et al.   Journal of Clinical Medicine

A pilot randomised controlled trial of community-led ANtipsychotic Drug REduction for Adults with Learning Disabilities

(2017) Rachel McNamara et al.   HEALTH TECHNOLOGY ASSESSMENT

Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform

(2017) Nola M. Ries et al.   Journal of Bioethical Inquiry

Guidelines for research recruitment of underserved populations (EERC)

(2016) Yui Matsuda 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

Participant exclusion criteria in treatment research on neurological disorders: Are unrepresentative study samples problematic?

(2015) Ranak B. Trivedi et al.   Contemporary Clinical Trials

Researching Scabies Outbreaks among People in Residential Care and Lacking Capacity to Consent: A Case Study

(2015) Michael G. Head et al.   Public Health Ethics

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

Assessing the external validity of a randomized controlled trial of anthelminthics in mothers and their children in Entebbe, Uganda

(2014) James D Millard et al.   Trials

Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trials

(2013) Adam Nishimura et al.   BMC Medical Ethics

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

Underrepresentation of Elderly People in Randomised Controlled Trials. The Example of Trials of 4 Widely Prescribed Drugs

(2012) Cécile Konrat et al.   PLoS One

'(More) trials and tribulations': the effect of the EU directive on clinical trials in intensive care and emergency medicine, five years after its implementation

(2010) K. Robinson et al.   JOURNAL OF MEDICAL ETHICS

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

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