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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.

ObjectivesTo capture the complexities and unique experience of a newly formed multidisciplinary and multicentre research team developing and deploying a COVID-19 study and to identify lessons learnt.DesignCo-autoethnographic study.SettingStaff at two UK academic institutions, a national charity and two major UK hospitals.ParticipantsResearchers, clinicians, academics, statisticians and analysts, patient and public involvement representatives and national charity.MethodsThe sampling frame was any content discussed or shared between research team members (emails, meeting minutes, etc), standard observational dimensions and reflective interviews with team members. Data were thematically analysed.ResultsData from 34 meetings and >50 emails between 17 March and 5 August 2020 were analysed. The analysis yielded seven themes with ‘Managing our stress’ as an overarching theme.ConclusionsMutual respect, flexibility and genuine belief that team members are doing the best they can under the circumstances are essential for completing a time-consuming study, requiring a rapid response during a pandemic. Acknowledging and managing stress and a shared purpose can moderate many barriers, such as the lack of face-to-face interactions, leading to effective team working.

Background A UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual level. At the outset, it was not known whether people with MS would wish to participate in the UK MS Register by personally contributing their data to the Register via a web-based system. Therefore, the research aim of this work was to build an internet-mounted recruitment and consenting technology for people with Multiple Sclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute data to the UK MS Register, by determining whether the information provided could be used to describe a cohort of people with MS. Methods The web portal was developed using VB.net and JQuery with a Microsoft SQL 2008 database. UK adults with MS can self-register and enter data about themselves by completing validated questionnaires. Descriptive statistics were used to characterise the respondents. Results The web portal was launched in May 2011, and in first three months 7,279 individuals registered on the portal. The ratio of men to women was 1:2.4 (n = 5,899), the mean self-reported age at first symptoms was 33.8 (SD 10.5) years, and at diagnosis 39.6 (SD 10.3) years (n = 4,401). The reported types of MS were: 15% primary progressive, 63% relapsing-remitting, 8% secondary progressive, and 14% unknown (n = 5,400). These characteristics are similar to those of the prevalent MS population. Employment rates, sickness/disability rates, ethnicity and educational qualifications were compared with the general UK population. Information about the respondents’ experience of early symptoms and the process of diagnosis, plus living arrangements are also reported. Conclusions These initial findings from the MS Register portal demonstrate the feasibility of collecting data about people with MS via a web platform, and show that sufficient information can be gathered to characterise a cohort of people with MS. The innovative design of the UK MS register, bringing together three disparate sources of data, is creating a rich resource for research into this condition.

In order to fully understand and explore the effectiveness of any intervention for the management of multiple sclerosis (MS), it is important to have robust, valid, reliable, and universally applied measures. The recent article, ‘Disability outcome measures in multiple sclerosis clinical trials’ by Cohen, Reingold, Polman and Wolinsky (2012), explores this issue in regards to the effective measurement of MS-related disability, and the utilisation of patient-reported outcome measures, whilst highlighting the need for collaboration between the academic and clinical communities. Although it is important to examine disability measures, it is also equally important to recognise that physical function is only one aspect of a person’s experience; for example, quality of life and psychological well-being are also important aspects to assess. The application of e-health technologies and patient registers could be a useful method of gaining additional information, using patient-reported outcomes. This commentary explores these issues in relation to points raised by the Cohen et al. paper.

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.

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.

The structure, function, and dynamics of Earth's terrestrial ecosystems are profoundly influenced by how often (frequency) and how long (duration) they are inundated with water. A diverse array of natural and human-engineered systems experience temporally variable inundation whereby they fluctuate between inundated and non-inundated states. Variable inundation spans extreme events to predictable sub-daily cycles. Variably inundated ecosystems (VIEs) include hillslopes, non-perennial streams, wetlands, floodplains, temporary ponds, tidal systems, storm-impacted coastal zones, and human-engineered systems. VIEs are diverse in terms of inundation regimes, water chemistry and flow velocity, soil and sediment properties, vegetation, and many other properties. The spatial and temporal scales of variable inundation are vast, ranging from sub-meter to whole landscapes and from sub-hourly to multi-decadal. The broad range of system types and scales makes it challenging to predict the hydrology, biogeochemistry, ecology, and physical evolution of VIEs. Despite all experiencing the loss and gain of an overlying water column, VIEs are rarely considered together in conceptual, theoretical, modeling, or measurement frameworks and approaches. Studying VIEs together has the potential to generate mechanistic understanding that is transferable across a much broader range of environmental conditions, relative to knowledge generated by studying any one VIE type. We postulate that enhanced transferability will be important for predicting changes in VIE function in response to global change. Here we aim to catalyze cross-VIE science that studies drivers and impacts of variable inundation across Earth's VIEs. To this end, we complement expert mini-reviews of eight major VIE systems with overviews of VIE-relevant methods and challenges associated with scale. We conclude with perspectives on how cross-VIE science can derive transferable understanding via unifying conceptual models in which the impacts of variable inundation are studied across multi-dimensional environmental space.

Background Traumatic spinal cord injury is a devastating condition impacting adversely on the health and wellbeing, functioning and independence, social participation and quality of life of the injured person. In Australia, there are approximately 15 new cases per million population per year; economic burden estimates suggest 2 billion dollars annually. For optimal patient outcomes expert consensus recommends expeditious transfer (“<24 hours of injury”) to a specialist Spinal Cord Injury Unit, where there is an interdisciplinary team equipped to provide comprehensive care for the many and complex issues associated with traumatic spinal cord injury. No study of this patient population has been undertaken, that assessed the extent to which care received reflected clinical guidelines, or examined the patient journey and outcomes in relation to this. The aims of this study are to describe the nature and timing of events occurring before commencement of specialist care, and to quantify the association between these events and patient outcomes. Methods and design The proposed observational study will recruit a prospective cohort over two years, identified at participating sites across two Australian states; Victoria and New South Wales. Included participants will be aged 16 years and older and diagnosed with a traumatic spinal cord injury. Detailed data will be collected from the point of injury through acute care and subacute rehabilitation, discharge from hospital and community reintegration. Items will include date, time, location and external cause of injury; ambulance response, assessments and management; all episodes of hospital care including assessments, vital signs, diagnoses and treatment, inter-hospital transfers, surgical interventions and their timing, lengths of stay and complications. Telephone follow-up of survivors will be conducted at 6, 12 and 24 months. Discussion There is limited population level data on the effect of delayed commencement of specialist care (>24 hours) in a Spinal Cord Injury Unit. Examining current health service and clinical intervention pathways in this Australian population-based sample, in relation to their outcomes, will provide an understanding of factors associated with patient flow, resource utilisation and cost, and patient and family quality of life. Barriers to streamlined effective early-care pathways and facilitators of optimal treatment for these patients will be identified.

Background: Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data. Methods: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries’ leaders, followed by telephone interviews with them. Results: Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients’ perspectives were only collected in six registries. Conclusions: The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.

PurposeGenetic studies of multiple sclerosis (MS) susceptibility and severity have focused on populations of European ancestry. Studying MS genetics in other ancestral groups is necessary to determine the generalisability of these findings. The genetic Association study in individuals from Diverse Ancestral backgrounds with Multiple Sclerosis (ADAMS) project aims to gather genetic and phenotypic data on a large cohort of ancestrally-diverse individuals with MS living in the UK.ParticipantsAdults with self-reported MS from diverse ancestral backgrounds. Recruitment is via clinical sites, online (https://app.mantal.co.uk/adams) or the UK MS Register. We are collecting demographic and phenotypic data using a baseline questionnaire and subsequent healthcare record linkage. We are collecting DNA from participants using saliva kits (Oragene-600) and genotyping using the Illumina Global Screening Array V.3.Findings to dateAs of 3 January 2023, we have recruited 682 participants (n=446 online, n=55 via sites, n=181 via the UK MS Register). Of this initial cohort, 71.2% of participants are female, with a median age of 44.9 years at recruitment. Over 60% of the cohort are non-white British, with 23.5% identifying as Asian or Asian British, 16.2% as Black, African, Caribbean or Black British and 20.9% identifying as having mixed or other backgrounds. The median age at first symptom is 28 years, and median age at diagnosis is 32 years. 76.8% have relapsing–remitting MS, and 13.5% have secondary progressive MS.Future plansRecruitment will continue over the next 10 years. Genotyping and genetic data quality control are ongoing. Within the next 3 years, we aim to perform initial genetic analyses of susceptibility and severity with a view to replicating the findings from European-ancestry studies. In the long term, genetic data will be combined with other datasets to further cross-ancestry genetic discoveries.