Around 125,000 people in the UK live with multiple sclerosis, and the disease typically begins in their twenties, accumulating disability over decades. This project mines real-world data from international registries to answer two questions that clinical trials have left unresolved: how to respond when MRI scans show silent brain lesions in patients already on treatment, and whether starting drugs immediately after a first MS episode improves long-term outcomes over waiting. Current treatment guidelines lack evidence on these points because trials are too short and too small. The researchers will analyse data from thousands of patients in the MSBase registry, the Swedish MS Register, and a Welsh hospital database, comparing disability progression over many years. A pilot study of 3,566 patients already found that silent lesions on treatment predict more relapses, regardless of which drug is used. If successful, the work will produce evidence-based clinical guidelines that could reduce long-term disability. A third project builds an automated system to extract detailed treatment data from NHS electronic health records, feeding 10,000 to 21,300 UK patients into international registries without extra clinician time. This would let researchers answer further questions raised by patients—such as how to sequence drugs or personalise treatment—improving care for a chronic condition that affects people for most of their lives.
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Research Question Can real-world data inform the optimal use of current disease-modifying treatments (DMTs) to reduce disability accumulation in relapsing-remitting multiple sclerosis (RRMS)? Background 125,000 people live with MS in the UK. As the disease typically starts in the 20s, any disability has long-term detrimental effects, both personal and societal. There are 13 licensed DMTs in MS, of varying toxicity and efficacy. However, their optimal use is not established because clinical trials do not address many key issues (e.g. how to respond to subclinical disease activity, shown by clinically silent MRI lesions (CSLs), occurring on treatment) and their duration is usually too short to determine long-term impact. Real-world data benefits from long follow-up duration from large numbers of people with MS (pwMS). Although the UK has a rich potential source of data on pwMS, our national registries contain few detailed records and data from only 1,000 pwMS data is submitted to the largest international registry, MSBase. Aims and Objectives Project 1. To establish the prognosis and optimal management of pwMS who have on-treatment CSLs, to generate evidence-based clinical guidelines. Pilot data (comparing 3,566 pwMS from MSBase) found that on-treatment CSL predicted a significantly greater risk of relapses, irrespective of DMT, lesion location and type. Project 2. To compare the outcomes of immediate versus later DMT initiation in people with a first clinical episode of MS. Project 3. To design a system to improve access to data on the treatment of pwMS, to improve clinical care and provide more data to existing national/international MS registries. Key questions raised by our pwMS steering group could then be answered: how should DMTs be most effectively sequenced? And how should DMTs be personalised to individual pwMS? Methods Projects 1 and 2 will use existing registries (MSBase, Swedish MS Register and University Hospital Wales) to compare long-term disability outcomes in pwMS: [1] with and without CSL on treatment (stratified by CSL number and site, and whether treatment was switched); and [2] with a first clinical episode of MS whose DMTs are initiated immediately or delayed (stratified by MRI disease activity and DMT potency). Project 3. Development and introduction of an automated system to extract data on consented pwMS to send to existing national and international MS registries, piloted in all twelve NHS hospitals using one international electronic healthcare record (EHR) then incorporated into two others. Dissemination and outputs Present and publish each aim including evidence-based management guidelines on CSL and timing of treatment initiation. Anticipated impact Projects 1 & 2 will identify treatment strategies to reduce long-term disability accrual, reducing the costs of MS to the person, the health service and society. Project 3 will provide ongoing detailed clinical data from 10,000-21,300 pwMS to MS registries (from the UK pilot alone) without additional clinician time. The automated extraction methodological framework will be published and applied to other EHRs, further increasing depth and breadth within registries. Feedback Our patient steering group and the neurology lead for NHS Getting It Right First Time strongly support this project.
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