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IntroductionAn algorithmically identified Multiple Sclerosis (MS) population in Wales using a diagnostic method based on McDonald criteria alone had less severe disease compared to those with multiple encounters. We investigated the nature of the encounters.MethodMS subjects were identified using two algorithms, ‘Manitoba10’ based on multiple healthcare encounters and based on McDonald criteria minus the Manitoba10 population ‘Not Manitoba10’. Top 10 primary admissions, number of chest infections (ICD10 J00-J06, J09-J18, J20-J22) and UTIs (ICD10 N390) were compared to the general population.Results1,845,360/4,616,124 subjects in the general population had a UTI or chest infection, versus (4,166/5,438) Manitoba10 and (2,346/4,153) Not Manitoba10. Mean UTI and chest infection admissions were significantly higher in Manitoba10 versus the general population (UTI 1.45,p<0.001, Chest 0.79,p<0.001); in Not Manitoba10 only UTI was significant (UTI 0.45,p<0.001, Chest 0.48,p=0.464). Manitoba10 cohort had significantly higher UTI/Chest infection admissions compared to Not Manitoba10 (p<0.001). Of the top 10 primary causes of hospital admission, Manitoba10 features more events related to increasing disability (Holiday relief care, sepsis, pneumonitis), whereas the general population has more frequent admissions for cancer related events and UTIs.DiscussionMS subjects with multiple encounters have more frequent hospital admissions for UTIs and chest infections potentially contributing to more severe disease.

BackgroundThe UK MS Register (UKMSR) developed an electronic version the Symbol Digit Modalities Test (SDMT) called the Cognitive Reaction (CoRe) test that has been validated within clinics on tablet computers. We developed a new version of the CoRe application (V2) for use on personal devices but also incorporates a range of symbols.AimTo establish the responsiveness to different symbol sets using the CoRe app.MethodsCoRe was adapted for use on Apple devices. Symbols sets were added, including: classic, emoji and pictographs. We recruited MS Register participants, with a link made available to the Apple testflight application.Results191 pwMS downloaded CoRe V2, 185 were linked to UKMSR data: 116 Relapsing, 61 Progressive, 8 unspecified pwMS. 131 used an iPhone and 60 a tablet. 644 tests were completed, with a mean per pwMS 3.05±2.5 (mean±SD). 264 completed the ‘classic’ symbols: answered 42.2±12.8, correct 41.5±13.6; 220 completed ‘emojis’, answered 54.6±16.07, correct 53.8±16.5; 160 completed ‘pictographs’, answered 44.6±14.2, correct 43.6±14.5. Linear regression with correct score as the dependent variable found that Emoji scores were increased by 12.5 [10, 15] and scores were decreased -0.5 per year [-0.6, -0.4].ConclusionPwMS performed better at a younger age and when using the emoji symbols compared to the classic and pictograph symbols. The basis of this difference requires further investigation.

BackgroundThe UK MS Register (UKMSR) collects multiple sclerosis (MS) clinical data from UK NHS specialist treatment centres. Relevant clinical data for research is difficult to access and time consuming to obtain- clinical letters remain the canonical record for patient interaction. We obtained outpatient letters from 11 NHS sites and used natural language processing (NLP) techniques to harvest data.AimCapture minimally relevant clinical dataset from outpatient letters.MethodWe defined and implemented a ruleset using General Architecture for Text Engineering (GATE). Seeking forename, surname, DOB, gender, NHSNumber, clinic-date, postcode, MSType and EDSS. In a validation task, 100 randomly selected letters were manually reviewed by domain experts and results were compared with those of the algorithm for accuracy.Results2436 letters from 771 individuals were analysed. F-measures were: forename (99.0%), surname (99.0%), DOB (100.0%), gender (94.7%), NHSNumber (100.0%), clinic-date (94.4%), postcode (99.5%), MSType (95.7%), EDSS (97.4). Overall, 115 new EDSS scores were obtained.ConclusionNLP can be used to accurately extract information from free text in outpatient letters. This process can be built into a routine ingestion pipeline so that information can regularly be added to routinely collected clinical data, enhancing the data used for research at the UKMSR.

Maternal sun exposure in gestation and throughout the lifetime is necessary for vitamin D synthesis, and living near the sea is a population level index of seafood consumption. The aim of this study was to estimate the incidence rate of multiple sclerosis (MS) in Wales and examine its association with sun exposure, coastal living, and latitude. The study used a database of MS hospital visits and admissions in Wales between 2002 and 2013. For the 1,909 lower layer super output areas (LSOAs) in Wales, coastal status, population, longitude/latitude, and average sunshine hours per day were obtained. Age-specific and age-standardised MS incidence were calculated and modelled using Poisson regression. The distribution of births by month was compared between MS cases and the combined England and Wales population. There were 3,557 new MS cases between 2002 and 2013, with an average annual incidence of 8.14 (95% CI: 7.69-8.59) among males and 12.97 (95% CI: 12.44-13.50) among females per 100,000 population. The female-to-male ratio was 1.86:1. For both sexes combined, the average annual incidence rate was 9.10 (95% CI: 8.80-9.40). All figures are age-standardized to the 1976 European standard population. Compared to the combined England and Wales population, more people with MS were born in April, observed-to-expected ratio: 1.21 (95% CI: 1.08-1.36). MS incidence varied directly with latitude and inversely with sunshine hours. Proximity to the coast was associated with lower MS incidence only in easterly areas. This study shows that MS incidence rate in Wales is comparable to the rate in Scotland and is associated with environmental factors that probably represent levels of vitamin D.

Cognitive impairments in Multiple Sclerosis (MS) are prevalent and disabling yet often unaddressed. Here, we optimised automated online assessment technology for people with MS and used it to characterise their cognitive deficits in greater detail and at a larger population scale than previously possible. The study involved 4526 UK MS Register members over three stages. Stage 1 evaluated 22 online cognitive tasks and established their feasibility. Based on MS discriminability a 12-task battery was selected. Stage 2 validated the resulting battery at scale, while Stage 3 compared it to a standard neuropsychological assessment. Clustering analysis identified a prevalent MS subtype exhibiting significant cognitive deficits with minimal motor impairment. Disability in this group is currently unrecognised and untreated. These findings underscore the importance of cognitive assessment in MS, the feasibility of integrating online tools into patient registries, and the potential of such large-scale data to derive insights into symptom heterogeneity. Online cognitive testing combined with the reach of a digital patient registry revealed a subtype of people with Multiple Sclerosis with significant cognitive impairment but no motor deficits. This hidden disability is often underestimated and left untreated.

IntroductionThe UK MS Pregnancy Register gathers pregnancy data in women with multiple sclerosis (MS) to address research gaps. We present data from >100 participants recruited since initiation in 2021.MethodsWomen with MS enter data via a dedicated online portal, completing questionnaires at 2 timepoints during pregnancy, and 3- and 12 months post-partum.ResultsOf 131 participants, most were White ethnicity (91%), and had relapsing-remitting MS (94%). 101 (89%) had ever taken DMT. Mean age at diagnosis and registration were 28.6 and 33.1 years respec- tively. Most registered in the first trimester of pregnancy (47.3%, n=62). Median EDSS was 2.5. 18 relapses were recorded in 15 patients; most relapses occurred in late pregnancy and postpartum. 78% discussed pregnancy in advance with their MS team. 86 pregnancies were exposed to DMT (62.3%), most commonly natalizumab (34.9%, n=30), glatiramer acetate (20.9%, n=18), and dimethyl fumarate (12.8%, n=11). 120 participants (91.6%) took supplements during pregnancy. Delivery gestation varied from 38 to 41 weeks, with the majority having delivered at 40 weeks. Postnatally, 58.3% of participants scored >10 on the Edinburgh PND scale.ConclusionSuch data demonstrates feasibility of large-scale, patient-orientated data gathering. Further work is required to improve postpartum data acquisition.

BackgroundTo improve trial efficiency (time and cost) the Optimal Clinical Trials Platform for Progressive Multiple Sclerosis (OCTOPUS) trial [ISRCTN 14048364] will test a number of treatments, to slow disability in Progressive MS (PMS) in a multi-arm multi-stage fashion: a MAMS Platform. Timely recruitment is important and the UK MS Register (UKMSR) has designed and is operating the registration of interest (ROI) portal. Aim: To examine the initial wave of potential participants for OCTOPUS.MethodWe built a dual-element recruitment platform comprising, UKMSR and non-UKMSR (similar, but without previously collected data). All registered were emailed to complete follow-up survey with specific eligibility criteria. Aggregated data were made available to the study team for further clinical assessment.ResultsRegistrants: 569 non-UKMSR-ROI, 1637 UKMSR.As of: 11/1/2023 follow up data were provided by: Non-UKMSR: 413;153(37%) meeting eligibility. 30(7%) currently ineligible. UKMSR: 860; 659(40%) meeting eligibility. 311(19%) currently ineligibleParticipants were ineligible for reasons including: age (25-70 inclusive allowable), no evidence of pro- gression, unable to tolerate MRI (required for stage 1), contraindicated medication. 812 participants are eligible with 82% having UKMSR patient-reported outcome data.ConclusionTrial recruitment can be challenging. UK MS Register eligibility screening methods will be valuable in ensuring the trial recruits participants quickly, ensuring efficiency and cost effectiveness.

The association between vitamin D deficiency and multiple sclerosis (MS) is well described. We set out to use remote sampling to ascertain vitamin D status and vitamin D supplementation in a cross-sectional study of people with MS across the UK. People with MS and matched controls were recruited from across the UK. 1768 people with MS enrolled in the study; remote sampling kits were distributed to a subgroup. Dried blood spots (DBS) were used to assess serum 25(OH)D in people with MS and controls. 1768 MS participants completed the questionnaire; 388 MS participants and 309 controls provided biological samples. Serum 25(OH)D was higher in MS than controls (median 71nmol/L vs 49nmol/L). A higher proportion of MS participants than controls supplemented (72% vs 26%, p<0.001); people with MS supplemented at higher vD doses than controls (median 1600 vs 600 IU/day, p<0.001). People with MS who did not supplement had lower serum 25(OH)D levels than non-supplementing controls (median 38 nmol/L vs 44 nmol/L). Participants engaged well with remote sampling. The UK MS population have higher serum 25(OH)D than controls, mainly as a result of vitamin D supplementation. Remote sampling is a feasible way of carrying out large studies.

Understanding the associations and potential drivers of long-term disability in Multiple Sclerosis (MS) is of clinical and prognostic value. Previous data have suggested a link between depression and disability accrual in MS. We aimed to determine whether depression in early MS predicts subsequent accrual of disability. Using data from the UK MS Register, we identified individuals with and without symptoms of depression and anxiety close to disease onset. We used Cox proportional hazards regression to evaluate whether early depressive or anxiety symptoms predict subsequent physical disability worsening, measured using the Expanded Disability Status Scale (EDSS). We analysed data from 862 people with MS of whom 134 (15.5%) reached an EDSS of ≥ 6.0. Early depressive symptoms were associated with an increased risk of reaching an EDSS of 6.0 (HR 2.42, 95% CI 1.49–3.95, p < 0.001), however this effect dissipated when adjusting for baseline EDSS (HR 1.40, 95% CI 0.84–2.32, p = 0.2). These data suggest that early depressive symptoms in MS are associated with subsequent disability accrual, but are likely the result of disability rather than its cause.

Incorporating cognitive testing into routine clinical practice is a challenge in multiple sclerosis (MS), given the wide spectrum of both cognitive and physical impairments people can have and the time that testing requires. Shortened paper and verbal assessments predominate but still are not used routinely. Computer-based tests are becoming more widespread; however, changes in how a paper test is implemented can impact what exactly is being assessed in an individual. The Symbol Digit Modalities Test (SDMT) is one validated test that forms part of the cognitive batteries used in MS and has some computer-based versions. We developed a tablet-based SDMT variant that has the potential to be ultimately deployed to patients' own devices. This paper aims to develop, validate, and deploy a computer-based SDMT variant, the Cognition Reaction (CoRe) test, that can reliably replicate the characteristics of the paper-based SDMT. We carried out analysis using Pearson and intraclass correlations, as well as a Bland-Altman comparison, to examine consistency between the SDMT and CoRe tests and for test-retest reliability. The SDMT and CoRe tests were evaluated for sensitivity to disability levels and age. A novel metric in CoRe was found: question answering velocity could be calculated. This was evaluated in relation to disability levels and age for people with MS and compared with a group of healthy control volunteers. SDMT and CoRe test scores were highly correlated and consistent with 1-month retest values. Lower scores were seen in patients with higher age and some effect was seen with increasing disability. There was no learning effect evident. Question answering velocity demonstrated a small increase in speed over the 90-second duration of the test in people with MS and healthy controls. This study validates a computer-based alternative to the SDMT that can be used in clinics and beyond. It enables accurate recording of elements of cognition relevant in MS but offers additional metrics that may offer further value to clinicians and people with MS.