In financial year ending December 2024 Transform MS CIC has continued to grow, allowing it to extend the range and volume of activities aligned with its stated Community Purpose, which is to provide benefit to people with Multiple Sclerosis (MS) and Related Diseases (MSRD). The activities primarily come under five themes: MS Service Development: In 2024 Transform MS CIC has continued to be instrumental in the development and growth of an initiative called Transforming MS for all (TMSFA). TMSFA is an MS clinical community-led initiative seeking to improve clinical services, and related activities, supporting people with MS. It has been developed to solve challenges represented by 70 clinical centres across the whole UK and to develop ongoing consensus within the community around priority projects. Transform MS CIC hosts this initiative, providing support and the infrastructure needed to apply for and manage grants and deliver projects. Highlights for 2024 include: 1. Continued development and expansion of the TMSFA website (https://transformingmsforall.org/) which hosts resources and useful information for the MS community. 2. Planning for the next TMSFA summit meeting: another national meeting for the TMSFA community held at the Kings Fund London. 3. The group commenced a project to create a consensus of expectation relating to MS care delivery. This has involved interviews and focus groups with people with MS, service support managers and various clinical groups. 4. Secured £130,800 funding for MS focused projects. Transform MS CIC have also continued to support the development of the local South West MS network directly. We have continued to use our resources and contacts to raise funds to support a monthly Regional MS Clinical meeting that has improved accuracy of diagnosis and treatment decision making for people with MS across Devon and Cornwall. We also continued to support a programme of webinars and in person meetings linked to a website and research community developed in partnership with the South West Peninsula Clinical Research Network. (https://sites.google.com/nihr.ac.uk/swp-ms-network/home). During 2024, Transform MS CIC supported three informational webinars hosted by the South West MS Research Network. The first of which, in May 2024, was an opportunity for patients to pose questions towards invited guest Professor Klaus Schnierer of Queen Mary University of London, Consultant Neurologist at The Royal London Hospital, Barts Health NHS Trust. Topics raised by the 129 patients who registered included understanding progressive MS, treatment advances and management strategies, along with areas such as lifestyle, support and the future outlook. In August 2024, 77 participants registered to hear about areas where MS research is breaking new ground, specifically for this webinar, augmented reality (AR) in MS care. Dr Will Young, an associate Professor at the University of Exeter and Chief Investigator for the PARAMS study, was invited to provide an overview of the PARAMS Phase I study, discuss how technologies such as AR and motion tracking can be integrated into MS care and bridging gaps between these new technologies and current MS assessment methods. December 2024 saw 187 people register for the Smouldering MS webinar, with guest speakers Professor Gavin Giovannoni, Professor of Neurology at Barts and The London School of Medicine and Dentistry, and Professor Jeremy Hobart, University of Plymouth/University Hospitals Plymouth NHS Foundation Trust. This webinar was based around discussing Smouldering MS as the silent driver of progression in MS. The two professors went on to describe how neuroplasticity works and the brain's resilience. They discussed the current gaps in MS Care, especially MS specialist shortage, and finally what the future of MS diagnosis and management is looking like. In addition to these webinars, Transform MS CIS also arranged a visit to the South West MS Society Community Group, where we discussed how together, Transform MS CIC and the South West MS Research Network are working to ensure we have a coordinated research model across the whole of the region, which ensures anyone within the South West, who wants to be involved in research, will have the opportunity to do so. Community Benefits: Establishment of community, infrastructure and leverage of funding to support MS community projects focus on improving care and developing clinical services across the UK and locally. Promoting research and new information about MS research to a broader community to benefit people with MS and encourage development of a research focused community. Measurement Science consultancy: Transform MS continues to support projects to advance the understanding and quality of the measurement of health, primarily in the context of clinical research. Improved quality of measurement (our focus is on Patient Reported Outcome measures) helps support the collection of evidence required to develop and approve new treatments. Two major projects were supported during 2024 these as follows: 1. Smouldering Associated Worsening (SAW) in MS. We commenced interviewing of 40 participants globally to understand more about the condition and inform the development of tools to support clinical identification, evaluation and measurement that will support the targeting and assessment of treatment options for people with SAW-MS. 2. To support a clinical study of a new treatment for people living with Amyotrophic Lateral Sclerosis (ALS) we supported interviews of study participants across 4 countries. This helped the study team obtain different perspectives of the impact of the treatment and understand challenges and opportunities in measuring the clinical impact of ALS. Community Benefits: Our goal is increased awareness of the value of high-quality measurement, developing knowledge and understanding of novel, modern approaches to data analysis in clinical studies. New insights and tools to support measurement of key symptom impacts in MS, and other conditions, are required to improve effectiveness of clinical research. Scales Licensing: Transform MS continued licensing activity of Patient Reported Outcome measures in 2024. These tools are used to provide important information on disease progression in people with Neurological Conditions. This information helps inform clinical trials of new treatments and clinical monitoring for targeting care. In 2024 Transform MS provided 25 licenses for large scale clinical trials of new treatments/interventions. In addition to commercial licensing Transform MS has also implemented a policy where projects which wish to use the outcome measures but are being delivered using public/rather than commercial funding either get a free license or a significant discount. In 2024 there were 8 licenses for clinical or academic projects issued on this basis. Community Benefits: Transform MS, through its licensing of Patient Reported Outcome measures, directly contributes to the advancement of knowledge relating to MS other neurological conditions and the impact of treatments and interventions. MS Education and Research: Our team, including honorary staff members, have been involved in activities that help advance knowledge specific to MS clinical care. This includes participation in seminars/on-line meetings both in the UK and internationally, to talk about clinical services and research. At a local level, we have also continued to support delivery of a module focused on MS care at the University of Plymouth and support a student project researching the impact on COVID-19 on the diagnosis and treatment of people with MS. Community Benefits: Helping advance the knowledge of people within the medical community on the latest developments and practices in MS care and research. Medical Reports: Provision of over 30 medical reports/documentation to support people with MS. Community Benefits: These reports provide important information for people with MS to evidence the impact of their MS and so represents a direct community benefit. Community Events/Centres: Transform MS has continued to develop stronger relationships with the local MS society groups and two regional MS Centres. These groups have committed to promoting activities that Transform MS supports, through social media and newsletters, as well as contributing to projects. Transform MS also supported these organisations in the delivery of their activities through advice and guidance and financial support. Community Benefits: Helping develop and support the local MS community through events and dissemination of information of value to people with MS in our local community. Community Sponsorship: Transform MS has sponsored equipment for the Ride Canada challenge Support Dominic's #RideCanada4MS for Brain Health and will monitoring the challenges progress throughout 2024 and 2025.

The primary community stakeholders for Transform MS CIC during 2024 were people with MS and the clinical teams that support them. In our broader stakeholder network, we work with pharmaceutical companies and research teams that are focused on research linked to MS and Measurement Science in healthcare. In the activities of Transform MS CIC, listed in the previous section, people with MS and the MS clinical teams are directly involved in many of them and as a result directly inform the delivery of our projects and activities. This year has been hugely rewarding as a result of the work that has been undertaken within a global study relating to SAW. TMS has supported a global steering community, comprising clinical leaders and people with MS from across. The committee has guided and fed back on research outputs. SAW project insights have also been shared and discussed at two international conferences. It is anticipated this work will continue for the next two years. For both this research project and the one focused on ALS the team engaged with people living with the conditions to design the research activity, explore the insights and their views on those prior to developing outputs such as posters and journal articles. The TMSFA initiative was originally developed from engagement with over 70 MS clinical centres. Following this, a report was produced that was endorsed by those centres that proposed the development of Transforming MS for all to help address some of these challenges. During 2024 TMSFA attended numerous UK conferences and MS meetings (including the Association of British Neurologists, MS Trust, MS Society) to update the community on plans and outcomes of its work and get input from the community about how it can be most impactful. The TMSFA website also hosts a discussion forum where ideas and suggestions are received for the focus of future projects. The Research website referenced was designed by community input – people with MS, clinicians and researchers. It has a section which encourages the community to highlight areas that would benefit from research and opportunities to get involved in research studies and study design. Additionally at the webinars and face to face events referenced in the previous section people were asked to make suggestions for events and submit questions that were important for them in terms of MS research. The webinar then covered these areas with any not addressed covered in post event documents. Furthermore, during visits to the MS community groups, we actively encouragement feedback on the presentation of the day, how we could be more inclusive and what future events patients would like to see and/or be involved in. During collaborative work to support the Regional MS Clinical meeting and efforts to develop the South West MS research community Transform MS has worked closely with the 5 NHS hospital trusts in Devon and Cornwall, their MS Consultants and Specialist Nurses as well as the Health Innovation South West. These groups form part of the clinical community that are an important partner in delivering service improvements that benefit future outcomes for people with MS. As outlined above, at this stage of its development, community consultation has remained largely at the project level. As the company grows further in 2025 it is developing its partnership and engagement model and within this will seek to identify additional ways to deliver its social purpose and as part of that increased formal consultation with community partners will take place.

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