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

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.