Addressing ethnic disparities in neurological research in the United Kingdom: an example from the prospective multicentre COVID-19 Clinical Neuroscience Study

COVID-CNS Consortium

doi:10.1016/j.clinme.2024.100209

Addressing ethnic disparities in neurological research in the United Kingdom: an example from the prospective multicentre COVID-19 Clinical Neuroscience Study

COVID-CNS Consortium

Neuroimaging Department
1Department of Hepatology, Imperial College London, London, UK. 2Institute of Liver Studies at King's College School of Medicine at King's College Hospital, London, UK. 3Institute of Human Health and Performance, University College London, London, UK. 4Department of Asthma Allergy and Lung Biology, King's College London, London, UK. 5Division of Critical Care Medicine, University of Alberta, Edmonton, Canada.
King's College Hospital
Radboud University Medical Center
Tropical and infectious Disease Unit, Royal Liverpool University Hospital. Liverpool University Hospitals Foundation Trust, Liverpool, UK
MRC Biostatistics Unit University of Cambridge Cambridge UK; Population Health Sciences Institute Newcastle University Newcastle upon Tyne UK
Genomic Medicine, Manchester Academic Health Sciences Centre, Institute of Human Development, Manchester University, Central Manchester University Hospitals NHS Foundation Trust, Manchester, England.
Sheffield Teaching Hospitals and University of Sheffield
Department of Neurosurgery, The National Hospital for Neurology and Neurosurgery, London, UK.
Neurological Alliance
UCL Queen Square Institute of Neurology, University College London, Queen Square, London, WC1N 3GB, UK.
School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester , Manchester, England, UK; Manchester University NHS Foundation Trust , Manchester M13 9WL, UK
University of Cambridge
Univ London, Birkbeck University London, University College London, University of London Royal Veterinary College, University of London, St Georges University London, Imperial College London, Kings College London, Royal Holloway University London, Queen Mary University London, Div Populat Hlth Sci & Educ
Department of Basic & Clinical Neuroscience
Social Genetic and Developmental Psychiatry Centre

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

Abstract

BACKGROUND: Minority ethnic groups have often been underrepresented in research, posing a problem in relation to external validity and extrapolation of findings. Here, we aimed to assess recruitment and retainment strategies in a large observational study assessing neurological complications following SARS-CoV-2 infection.

METHODS: Participants were recruited following confirmed infection with SARS-CoV-2 and hospitalisation. Self-reported ethnicity was recorded alongside other demographic data to identify potential barriers to recruitment.

RESULTS: 807 participants were recruited to COVID-CNS, and ethnicity data were available for 93.2%. We identified a proportionate representation of self-reported ethnicity categories, and distribution of broad ethnicity categories mirrored individual centres' catchment areas. White ethnicity within individual centres ranged between 44.5% and 89.1%, with highest percentage of participants with non-white ethnicity in London-based centres. Examples are provided how to reach potentially underrepresented minority ethnic groups.

CONCLUSIONS: Recruitment barriers in relation to potentially underrepresented ethnic groups may be overcome with strategies identified here.

Original language	English
Article number	100209
Pages (from-to)	100209
Journal	Clinical medicine (London, England)
Volume	24
Issue number	3
Early online date	18 Apr 2024
DOIs	https://doi.org/10.1016/j.clinme.2024.100209
Publication status	Published - May 2024

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10.1016/j.clinme.2024.100209

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@article{0e43b1da3ec84332a5eb02ba6ff73592,

title = "Addressing ethnic disparities in neurological research in the United Kingdom: an example from the prospective multicentre COVID-19 Clinical Neuroscience Study",

abstract = "BACKGROUND: Minority ethnic groups have often been underrepresented in research, posing a problem in relation to external validity and extrapolation of findings. Here, we aimed to assess recruitment and retainment strategies in a large observational study assessing neurological complications following SARS-CoV-2 infection.METHODS: Participants were recruited following confirmed infection with SARS-CoV-2 and hospitalisation. Self-reported ethnicity was recorded alongside other demographic data to identify potential barriers to recruitment.RESULTS: 807 participants were recruited to COVID-CNS, and ethnicity data were available for 93.2%. We identified a proportionate representation of self-reported ethnicity categories, and distribution of broad ethnicity categories mirrored individual centres' catchment areas. White ethnicity within individual centres ranged between 44.5% and 89.1%, with highest percentage of participants with non-white ethnicity in London-based centres. Examples are provided how to reach potentially underrepresented minority ethnic groups.CONCLUSIONS: Recruitment barriers in relation to potentially underrepresented ethnic groups may be overcome with strategies identified here.",

author = "{COVID-CNS Consortium} and {van Wamelen}, {Daniel J} and Silvia Rota and Monika Hartmann and Martin, {Naomi H} and Alam, {Ali M} and Thomas, {Rhys H} and Dodd, {Katherine C} and Thomas Jenkins and Smith, {Craig J} and Zandi, {Michael S} and Ava Easton and Georgina Carr and Benjamin, {Laura A} and Lilleker, {James B} and David Saucer and Coles, {Alasdair J} and Nicholas Wood and Chaudhuri, {K Ray} and Gerome Breen and Michael, {Benedict Daniel}",

note = "Copyright {\textcopyright} 2024. Published by Elsevier Ltd.",

year = "2024",

month = may,

doi = "10.1016/j.clinme.2024.100209",

language = "English",

volume = "24",

pages = "100209",

journal = "Clinical medicine (London, England)",

issn = "1470-2118",

number = "3",

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T1 - Addressing ethnic disparities in neurological research in the United Kingdom

T2 - an example from the prospective multicentre COVID-19 Clinical Neuroscience Study

AU - COVID-CNS Consortium

AU - van Wamelen, Daniel J

AU - Rota, Silvia

AU - Hartmann, Monika

AU - Martin, Naomi H

AU - Alam, Ali M

AU - Thomas, Rhys H

AU - Dodd, Katherine C

AU - Jenkins, Thomas

AU - Smith, Craig J

AU - Zandi, Michael S

AU - Easton, Ava

AU - Carr, Georgina

AU - Benjamin, Laura A

AU - Lilleker, James B

AU - Saucer, David

AU - Coles, Alasdair J

AU - Wood, Nicholas

AU - Chaudhuri, K Ray

AU - Breen, Gerome

AU - Michael, Benedict Daniel

PY - 2024/5

Y1 - 2024/5

N2 - BACKGROUND: Minority ethnic groups have often been underrepresented in research, posing a problem in relation to external validity and extrapolation of findings. Here, we aimed to assess recruitment and retainment strategies in a large observational study assessing neurological complications following SARS-CoV-2 infection.METHODS: Participants were recruited following confirmed infection with SARS-CoV-2 and hospitalisation. Self-reported ethnicity was recorded alongside other demographic data to identify potential barriers to recruitment.RESULTS: 807 participants were recruited to COVID-CNS, and ethnicity data were available for 93.2%. We identified a proportionate representation of self-reported ethnicity categories, and distribution of broad ethnicity categories mirrored individual centres' catchment areas. White ethnicity within individual centres ranged between 44.5% and 89.1%, with highest percentage of participants with non-white ethnicity in London-based centres. Examples are provided how to reach potentially underrepresented minority ethnic groups.CONCLUSIONS: Recruitment barriers in relation to potentially underrepresented ethnic groups may be overcome with strategies identified here.

AB - BACKGROUND: Minority ethnic groups have often been underrepresented in research, posing a problem in relation to external validity and extrapolation of findings. Here, we aimed to assess recruitment and retainment strategies in a large observational study assessing neurological complications following SARS-CoV-2 infection.METHODS: Participants were recruited following confirmed infection with SARS-CoV-2 and hospitalisation. Self-reported ethnicity was recorded alongside other demographic data to identify potential barriers to recruitment.RESULTS: 807 participants were recruited to COVID-CNS, and ethnicity data were available for 93.2%. We identified a proportionate representation of self-reported ethnicity categories, and distribution of broad ethnicity categories mirrored individual centres' catchment areas. White ethnicity within individual centres ranged between 44.5% and 89.1%, with highest percentage of participants with non-white ethnicity in London-based centres. Examples are provided how to reach potentially underrepresented minority ethnic groups.CONCLUSIONS: Recruitment barriers in relation to potentially underrepresented ethnic groups may be overcome with strategies identified here.

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DO - 10.1016/j.clinme.2024.100209

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JO - Clinical medicine (London, England)

JF - Clinical medicine (London, England)

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ER -

Addressing ethnic disparities in neurological research in the United Kingdom: an example from the prospective multicentre COVID-19 Clinical Neuroscience Study

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