Self-diagnosed COVID-19 in people with multiple sclerosis: a community-based cohort of the UK MS Register

In the early phases of the UK COVID-19 outbreak, in the absence of clear evidence about the risks for people with multiple sclerosis (pwMS) and those taking immunomodulatory disease-modifying therapies (DMT), we launched a community-based study as part of the UK MS Register (UKMSR). We intended to capture the picture of COVID-19 among pwMS and their risk of contracting the disease. Here, we report our findings from 17 March to 24 April 2020. The COVID-19 study (clinicaltrials.gov:NCT04354519) is a prospective observational cohort launched on 17 March 2020 as part of the UKMSR (Ethics:16/SW/0194). PwMS completed a specific COVID-19 related survey which was combined with data held from before the pandemic where available. The primary outcome of the study is participant-reported self-diagnosis of COVID-19. Participants were asked if their diagnosis was confirmed by testing—the available test in the UK was reverse transcriptase-PCR. Participants reported if their sibling without MS, closest in age who was not living with them, had self-diagnosed COVID-19. The likelihood of having COVID-19 was assessed using multivariable regression analysis with the variables: age, gender, ethnicity, MS duration and type, self-isolation and DMTs. DMTs were considered after stratifying based on moderate-efficacy versus high-efficacy therapies (table 1). Disability was assessed using the last recorded web-based Expanded Disability Status Scale (webEDSS) or MS Impact Scale v2 (MSIS-29v2). View this table: Table 1 Distribution of individual disease-modifying therapies (DMTs) among participants of the COVID-19 study As of 24 April, out of 3910 participants, 237 (6.1% (95% CI 5.3% to 6.8%)) reported self-diagnosed COVID-19 among whom 54 (22.8% (17.5% to 28.2%)) also had a diagnosis by a healthcare professional based on symptoms and 37 (15.6% (11.2% to 20.6%)) a confirmed diagnosis by testing. Three participants reported hospitalisation due to COVID-19. No deaths were reported. Among 1283 siblings without MS, 79 (6.2%) had a reported diagnosis of COVID-19. …