Research Strategy Working Group Report and Recommendations Putting the pieces together

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1 Research Strategy Working Group Report and Recommendations Putting the pieces together

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3 Contents 2 Foreword by Sir Michael Peckham 3 Introduction 4 Summary of recommendations 5 The recommendations of the RSWG 21 Implementing the recommendations Annex: 22 The Research Strategy Working Group 24 The Research Network Focus Groups Research Strategy

4 Foreword By Professor Sir Michael Peckham, November 2008: After many years of research, it now seems clear that advances in neuroscience are beginning to offer therapies that can modify the course of Multiple Sclerosis. It is therefore essential that the MS Society, as the leading UK charitable funder of MS research, continues and seeks to amplify their support for those areas of science that are most likely to give improved methods of treatment. Up until now, the amount of money available for research into chronic neurological conditions like MS has been modest compared to fields like heart disease and cancer. The MS Society is to be commended on its commitment to increasing the funds available for MS research. A second major priority is a strong programme of research into the broader aspects of care, including the management of symptoms and disabilities. Care interventions must be soundly based and relevant to the needs of those affected by MS. Here, the Society has a special advantage as people affected by MS are intimately involved in developing overall strategy and in its implementation. Strategies provide useful frameworks for action but unforeseen discoveries may call for changes of direction. Identifying the unexpected at the earliest possible moment requires an awareness of advances in MS research as well as in related areas of work. To help achieve this there is a need to invest in collaborative networks. The MS Society has already made great strides in developing its strategy and we hope that this report will provide a useful framework for consolidating current activities and enhancing the scope and impact of future work. 2 Research Strategy

5 Introduction In January 2008 the MS Society started a new five year strategy entitled Putting the Pieces Together to Beat MS. This builds on the core strengths of the MS Society and draws on wide-ranging consultations with members of the Society, including volunteers and staff, as well as basic and clinical researchers and experts in health and social care. The Society s strategy To Beat MS has five strategic aims: research information support raising the standards of care leading the MS agenda Research remains an important strategic aim for the MS Society, which has made a commitment to: Fund and promote research into finding the cause and cure for MS, and improving care and services for people affected by MS. To deliver this and guide the research programme, the Society will: continue to involve people affected by MS in all aspects of the MS Society research programme sustain funding for MS research continue to invest in basic and translational (bench to bedside) clinical research establish a UK MS register commission social and economic research into the impact of MS support research into symptom relief and services for people affected by MS improve the communication of the outcomes of our research Research Strategy

6 To best deliver the research strategy as outlined in Putting the Pieces Together to Beat MS, the Research Strategy Working Group (RSWG) was established in April 2008 to identify and recommend research goals that would support delivery not only of the research-specific strategic aims but the overall MS Society strategy. Summary of Recommendations The RSWG has recommended that the MS Society: Continues to invest funds, year on year, in vital research Continues to focus on supporting research into nerve damage, protection and repair Develops proposals for, and facilitates, a UK MS Collaborative Research Network to unite MS research efforts Supports high quality research into paediatric MS Continues to develop the MS Clinical Trials Network to speed the translation of laboratory findings into the clinic and to support clinical trials for new MS therapeutics and interventions Supports leading-edge research into imaging markers for assessing MS therapies in clinical trials Supports a review of quality of life measures for MS, establishes a consensus on appropriate outcome measures for use in MS research and, if necessary, supports further development and validation of existing or new measures Supports the development of a UK MS register Raises the profile of MS symptom relief research to attract high calibre applications, to nurture and sustain momentum in this vital area and ensure positive outcomes are put into practice Leads on developing and evaluating MS services Ensures the research activities are driven by the needs and priorities of people affected by MS through their involvement in the MS Society 4 Research Strategy

7 Sustaining research funding is crucially important and must be a priority for the Society. It is essential that ways are found of amplifying the funds available for research, prioritising their allocation to outstanding and relevant work. In 2008 expenditure had already risen to 5.4m and it was anticipated that this would increase to more than 6m by the end of The Research Strategy Working Group strongly recommends that this upward trend should be maintained through the current five year strategy. 1 Funding In order to deliver on its commitment, the MS Society will ensure it maintains funding on research. This is vital to support the wide-ranging projects and to make much needed advances in areas of significant unmet need such as neuroprotection and symptom relief research. Research Strategy

8 Basic biomedical research seeks to understand the processes that influence the development and progress of MS and to identify potential targets for modifying or slowing disease progression. The eventual aim is to develop therapeutic strategies capable of halting MS and in due course to prevent its onset. As the largest funder of basic biomedical research devoted to MS in the UK, the Society is well placed to assume a leading role in setting a relevant, imaginative research agenda attractive to other potential sources of funding. 2 Biomedical Research Funding basic biomedical research, a traditional strength of the MS Society, is a priority. The focus should remain on nerve damage, protection and repair with the following key objectives: determining when and how axons are lost determining rates and measuring axonal loss identifying pharmacological targets for axon preservation determining mechanisms of remyelination and remyelination failure developing strategies for enhancing and promoting remyelination Neuroregeneration should be kept under review. The Society should also maintain an awareness of research on the re-routing of existing neural pathways (nervous system plasticity). 6 Research Strategy The RSWG identified three key areas of MS research: immune system modulation neuroprotection remyelination In addition, the group considered research on nerve regeneration in relation to MS. The group concluded that, despite the difficulty of mounting a meaningful research programme, the Society should maintain awareness in this area through monitoring progress in nerve regeneration strategies in the fields of stroke and spinal injuries research. Nervous system plasticity, the re-routing of existing neural pathways in MS, remains largely unexplored and may be a fruitful area of research with some evidence from MRI that plasticity does occur. The future treatment of MS is likely to be based on the use of combinations of therapies. Critical in the evolution of combination therapy will be combined immune-modulating and neuroprotective drugs. Significant advances are being made in the field of immune system modulation with the likelihood that current disease modifying drugs will be improved or superseded by more effective treatments. While there is a significant commitment globally to research on immune system modulation there is not much research into the protection from loss of demyelinated nerves (neuroprotection). Loss of nerves is known to be an early event in MS. It is also a feature of the chronic condition where it is associated with progression and the failure of remyelination.

9 Despite the best available immune-modulating drugs, it is likely that loss of nerves continues to take place albeit at a reduced rate. There is a pressing need for more research directed at understanding nerve loss and identifying drugs that will arrest this process and thereby slow progression. Currently there is little interest from the pharmaceutical industry in research & development on neuroprotective drugs, which may well be the result of poor progress in the development of effective neuroprotective drugs for stroke, despite heavy expenditure. There is a clear need to progress this field in MS through research that uses the discoveries from basic science efficiently to extend through to early phase translation of clinical treatments. The Clinical Trials Network was set up for this purpose. The combination of immune modulation (re-balancing of the immune system) and effective neuroprotective drugs for brain injury is important in order to optimise strategies for remyelination. This is the final process in developing a three way approach to treating MS which include: symptom relief nerve damage prevention nerve damage repair The MS Society s decision to support large centres focusing on remyelination at Cambridge and Edinburgh has promoted outstanding research and attracted global collaborations. Continued support through the targeted funding of research in these centres should be a key element of the MS Society strategy subject to an appropriate ongoing process of assessment. The MS Society has funded research in the UK for more than 50 years. Every effort should be made to ensure that valuable resources are focused on the support of highly original research capable of breaking the mould. This is not easy and may involve the support of high-risk proposals. There should be scope and freedom within the funding structure to take rapid advantage of new developments. The Society should scrutinize its research portfolio to ensure that cuttingedge work is indeed being supported. Related to this is the need for an antenna or intelligence capability alerting the Society to new opportunities in MS research or research in other fields. Research Strategy

10 3 UK MS Collaborative Research Network The MS Society should develop proposals to create a UK MS Collaborative Research Network designed to unite the MS research effort in the UK and speed the development and testing of new therapies. The Society should look to create and facilitate a UK MS Collaborative Research Network that will bring greater cohesion to the MS Society research portfolio, foster collaborations between MS research centres, promote the sharing of knowledge, provide the infrastructure to translate lab discoveries in potential therapies for MS and attract additional sources of funding. The Network could play a key role in ensuring that this requisite infrastructure is in place to make UK early phase trials highly competitive with support of the MS Clinical Trials Network. 4 Paediatric MS The MS Society should support high quality research into paediatric MS and ensure that UK-based paediatric MS research contributes to the work of the International Paediatric MS Study Group. It is estimated that about 5% of people with MS have symptoms before age 16. Although MS in children is being increasingly recognised, it is not clear which children after their first demyelinating event will develop MS. In children, there are a number of other conditions which share some symptoms with MS and, because these occur more frequently than in adults, neurologists can have some difficulty in deciding whether a child has MS, leading to delays in diagnosis. To date, research focused on paediatric MS has been limited. High quality research into Paediatric MS will be important in itself and also help to dissect the natural history and cause of MS and in the discovery of biomarkers to aid diagnosis and treatment. 8 Research Strategy

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12 5 The Translational Research continued development of the MS Society Clinical Trials Network (CTN) will actively contribute to promoting MS translational research (research that can be taken directly to the clinic). The CTN will provide a framework to support the MS Society in facilitating the development of collaborative, UK-wide investigatorled clinical trials of potential, primarily neuroprotective, therapies for MS. In further developing this programme the MS Society should focus on overcoming well-recognised barriers to moving proof of concept from the laboratory to the clinic. The following measures are needed to achieve this: improved communication with the MS research community to encourage the exploitation of observations and exploration of potential therapies facilitating access to business and regulatory support to trials in the MSS portfolio through building relations with the Medical Research Council Clinical Trials Unit and the UK Clinical Research Collaboration collaboration with industry and small biotech firms to provide potential agents for pre-clinical and clinical testing through the MS Society CTN identification of external, large scale and sustained funding to support and accelerate the Society s translational research portfolio through clinical trials the effective exploitation of MS Society intellectual property through well-conceived policies that maximise the potential for the development of new therapies to treat MS 10 Research Strategy

13 To improve the quality of life of people with MS, scientific discoveries need to be transformed into practical applications. Traditionally, neuroscience has not had a strong track record in translating basic observations into clinical treatments. The reasons are complex. They include a lack of significant funding for translational neurosciences and reluctance by scientists to apply their observations for the purpose of benefitting people with MS as a priority. To compound matters there are growing barriers between basic and clinical research, including the increasing regulatory and practical complexities of conducting research in a clinical setting. These obstacles impact most severely at the point where promising research is first taken into the clinic. Shortfalls in the funding required for this stage of development amount to 50K - 1million per investigational product. This, together with the decreased attractiveness of the UK as a base for clinical trials, highlights an increasing potential for market failure. Both costs and regulatory mechanisms are barriers to the conduct of trials in the UK. As the largest member led MS charity in the UK, the MS Society is uniquely placed to: influence and raise awareness of the need to progress clinical trials in scientific areas that have been identified as a priority facilitate the discovery and development of new therapies identify and engage with new sources of funding This is of critical importance as there is increasing evidence that large pharmaceutical companies are reluctant to commit to, for example, trials for neuroprotection until evidence of effectiveness is observed at Phase II. The Society should be proactive in further developing relations with the UK MS research and clinical community to ensure that potentially important observations are explored for practical exploitation where appropriate. This requires the Society to interact with university Technology Transfer Offices to seek their support to ensure that promising observations are protected, properly exploited and where appropriate fasttracked to clinical development. To this end the MS Society has established an Intellectual Property Advisory Group. With the average cost of developing a drug and bringing it to the clinic standing at approximately $400m, there is no realistic prospect of exploiting new research discoveries to develop new and improved treatments without close collaboration with the commercial sector. Research Strategy

14 MRI biomarkers continue to dominate MS clinical trials. The MS Society should capitalise on new developments and place emphasis on supporting leading-edge imaging research to accurately measure nerve loss as a pre-requisite for determining the efficacy of future neuroprotective therapies and remyelination strategies. The MS Society s scanner at the Institute of Neurology in Queen Square, London, is ideally placed to spearhead this work and should be available to the UK MS research community to facilitate this vital research. 6 Research into MRI Currently only MRI is used in the clinical monitoring of MS. In other fields of medicine a broader array of imaging biomarkers have begun to be linked with the evaluation of disease and some of these have also been developed for use in clinical trials. In some cases they can measure the effects of treatment or clarify the mechanism of action. There are some promising potential new biomarkers for MS based on MRI but much work is still needed for their proper validation. In general the biomarker field has proved difficult and comprehensive work in this area would be an enormous and costly undertaking with little guarantee of success. However, the Society should retain an awareness of the potential for discovering new MS biomarkers through both national and international research in this field, and the potential for international collaboration. 12 Research Strategy

15 The Society should ensure an awareness of the potential of its basic science portfolio and international collaborations to generate findings relevant to the development of biomarkers of MS. Extra resources need to be allocated to assessing and refining current functional and quality of life outcome measures and developing and testing new ones where indicated. Effective outcome measures will be crucial in the development of new therapies and interventions. 7 Measuring Outcomes The Society should commission a review of current quality of life measures in MS, evaluating their acceptability, reliability, validity, and responsiveness (over time). Following this the Society should seek to establish consensus in the MS community on the appropriate outcome measures to be used. If necessary the Society should consider commissioning the development and validation of quality of life measures and promoting their uptake, use and acceptance (particularly at the regulatory decision-making level e.g. NICE). A significant issue for evaluating MS clinical trials, in key areas such as neuroprotection or symptom relief, is having meaningful ways of testing the effectiveness of the therapy or intervention (functional outcome measures). The MS Society funded magnetic resonance imaging (MRI) unit at the National Hospital for Neurology and Neurosurgery in Queen Square, London continues to be a leader in the field of monitoring and clinical trial design. The research group at Queen Square is uniquely placed to develop MRI measures for neuroprotection with this Society funded scanner which is dedicated solely to MS research in the UK. Many of the standard functional outcome measures in use in MS are insensitive to change and not very reproducible. Furthermore, they may not take account of the knowledge and needs of people with MS. Thus clinically assessed changes often do not correlate with improvement in the quality of life of people with MS (i.e. what does the treatment or intervention enable an individual to achieve/do that they could not do before). In refining or developing more accurate, sensitive and reproducible outcome measures, consideration should be given to measure the impact from the patient perspective. Moreover, the Society should collaborate with the clinical and, in particular, the regulatory agencies to ensure that patient-reported outcomes and measures are given significant weighting in decisions on the effectiveness of new therapies and interventions. It is important to note that the US Food and Drug Administration (FDA), which is responsible for granting marketing authorisation in the US, is to begin stipulating which outcome measures it will accept when considering drug trial data for licensing. A number of the most widely used MS outcome measures are unlikely to be included hence the urgent need for sensitive, validated and acceptable outcome measures. Research Strategy

16 Care and Services Research Research that seeks to improve the quality of life for people living with MS should remain a priority for the Society. A greater insight into the impact of MS on people s lives and the needs of people affected by MS is crucial to inform further research and enable the delivery of appropriate services and support. This should include research into the social and economic impact of MS, and the changing needs of people affected by MS during relapses, remission and the progression of MS. There is an ongoing need to support the development and evaluation of effective and cost effective services to support people affected by MS to live independent lives. This should include, but should not be limited to, services that support the management of symptoms. The Society is in a unique position to support research into innovative services that move beyond traditional models and address the needs of people affected by MS. The increasing move towards the personalisation of services also highlights the need for accessible information, services and support to help people affected by MS to make informed choices. There is a clear need to assess gaps in our current knowledge, highlight where there are deficiencies and provide evidence to drive improvements that are of real and material benefit to people affected by MS. Where reactive models of research funding are failing to deliver on identified priorities, the Society should consider the commissioning of targeted research. 14 Research Strategy

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18 8 UK MS Register The Society should seek to identify and make use of opportunities to build on the register programme including the case for establishing a register of children and adolescents as a platform for paediatric MS research in the UK. In addition the register should also provide the basis for an annual state of MS report, outlining the number of people with MS, the impact of MS on their lives (including the social and economic impact), the services that they are currently accessing and their cost, their experience of these services and their unmet needs. Steps have been taken to create a pilot MS register. In its initial stage the register will concentrate on an anonymised audit of people affected by MS. The intention is that the register will make a valuable contribution to the Society s quality of life and services programme, providing information on the number of people living with MS in the UK and the ways that MS can impact on their lives. In due course the register should contribute to our knowledge of the natural history of MS. The Society has already supported an investigation into the costs of MS, and assessing the costs of services used by people with MS over time should be feasible with the register. Beyond the pilot stage the register has the potential to provide added value to the Society s research programme through providing data for related projects or test beds for taking research forward into service development. 16 Research Strategy

19 The MS Society should continue research into the effective treatment and management of symptoms. This should encompass research aimed at understanding the cause of, and helping people to manage the range of symptoms they experience, during the course of their condition. The Society should also explore how to further enhance the profile of the symptom relief research initiative, encouraging high calibre research applications, nurturing and sustaining momentum, and ensuring that positive outcomes are put in to practice. 9 Symptom Relief Research One of the most important issues that affects the quality of everyday life for people with MS is living with the unpredictable and often distressing symptoms of the condition. There is a clear need for research that improves the management of symptoms, and in 2003 the Society identified symptom relief as a priority research theme. Slow progress was made during the first years and little research was funded under this important theme. The Society responded by holding focused international workshops on fatigue and conducted scoping exercises in areas such as physiotherapy and the use of cognitive behavioural approaches to the relief of symptoms. The aim was to assist the research community in formulating applications. Furthermore, the grant administration process was revised with the creation of a new grant review panel with specific expertise in the field of applied research to nurture and facilitate the development of the symptom relief research programme. The Society also actively engaged in publicising the symptom relief research by targeting universities and research centres that were undertaking similar research in conditions other than MS. The MS Society is now receiving, and supporting, many more high calibre proposals in symptom relief research. It is important that the Society continues to build on achievements to date and works to further increase research into the relief of the symptoms of MS. Research Strategy

20 10 MS Services and Support The MS Society should continue to fund research that strengthens the evidence base behind which services and support work for people affected by MS. This should include the development and evaluation of new, innovative, services such as relapse management or vocational support. No new service should be introduced unless it is either supported by research evidence or includes a research component to assess its effectiveness. Equally the Society should fund research that generates evidence about the value of the MS specialist nurse and other specialist professionals to people with MS. Currently MS services are fragmented and in many instances inadequate. There are many attempts at local level to devise novel approaches to service provision, and there is an opportunity for the MS Society to draw on these activities to help create a coherent programme of service development underpinned by research. While continuing to support the improvement of clinical care is important, this research should not be limited to services to meet medical needs or delivered using traditional methods. The Society should be at the forefront of research into innovative services that truly meet the diverse needs of people affected by MS. This should also include services that transcend the medical model of care and are grounded in the principles of independent living. For example, effective support to enable people to remain in employment or return to work is a high priority for people affected by MS and a policy priority for government. However, little is known about the types of vocational support that are effective and helpful. A focus on the principles of independent living is being led within the Society by the Advisory Group on Independent Living. The purpose of this group is to guide and support the MS Society s work in improving access to, and the quality of, appropriate services and support for people affected by MS, grounded on principals of independent living. The involvement of this group will be vital to embed these principles within the research programme. The move towards increased personalisation of services is integral in current health and social care policy. This presents opportunities and challenges to people affected by MS and it is important that these changes take into account and are responsive to their needs. People with MS will need access to appropriate, evidence based information on the range of services available, and support to make informed decisions on their care. There is often a disparity between the views of people affected by MS as to which services or support they find helpful and the available research evidence. For example, many people with MS find specialist MS professionals such as nurses, physiotherapists and occupational therapists a vital source of knowledge and support. However, there is little research designed to measure the impact and value of these roles. In addition, little is known about the costs of providing such services. High quality research that establishes the value and the costs of delivering such services is vital to support their development and expansion. Moreover, including the full range of MS professionals in research, will contribute to strengthening the evidence base behind new and existing interventions and services. 18 Research Strategy

21 The Society should continue to ensure that its research activities are driven by the needs and priorities of people affected by MS. This will require the continued development of the Research Network to strengthen the involvement of people affected by MS and increased collaboration with other areas of the Society to help Put the Pieces Together to Beat MS. In particular the Society s Advisory Group on Independent Living should inform the research programme by identifying gaps in the evidence base. 11 Involving people affected by MS Research Strategy

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23 Implementing the recommendations A Research Strategy Committee will be established to advise, monitor and guide the Society on implementation of the recommendations contained in this report. The Committee would operate as a small group, headed by an independent chair, and would include people affected by MS, who would be central to the operation. Membership will be shaped, but not limited, by the Society s research strategy and the recommendations in this report. The MS Society is currently recruiting experts in the field of MS and those interested in MS research who have a desire to assist the Society in the delivery of its research strategy to join the Research Strategy Committee. Research Strategy

24 Annex The Research Strategy Working Group (RSWG) April - December 2008: Background The research strategy as outlined in Putting the Pieces Together to Beat MS is broad and ambitious. To best deliver the strategy it was important to further define both short and medium term priority areas in which to focus the research effort. The Research Strategy Working Group (RSWG), chaired by Professor Sir Michael Peckham, brought together a range of experts to address key areas and issues related to MS and to assess the current status. The emphasis was on identifying areas that are under researched and/or underresourced. This was particularly relevant to the area of social and economic impact of living with MS, symptom relief and MS services research. To guide and inform these discussions, two focus groups were held for people affected by MS and the outcomes summarised. Additional face-to-face meetings were held with some members of the RSWG to further define key issues. 22 Research Strategy

25 Members of the Research Strategy Working Group The MS Society gratefully acknowledges the time, dedication and support of the members of the Research Strategy Working Group, which was invaluable in developing this report. Professor Sir Michael Peckham (Chair) Gabrielle Ansems Public Involvement Programme Officer, MS Society Daniel Berry Head of Policy, MS Society Doug Brown Research Manager (Biomedical), MS Society Lee Dunster Head of Research, MS Society Ray Fitzpatrick Professor of Public Health and Primary Care, University of Oxford Helen Ford Consultant neurologist, Leeds Robin Franklin Professor of Neuroscience, University of Cambridge Ed Holloway Research Manager (Care and Services), MS Society Paul Matthews Vice-President for Imaging; Head, GSK Clinical Imaging Centre; Professor of Clinical Neurosciences, Department of Clinical Neurosciences, Imperial College, London Paul McCrone Reader in Health Economics, Institute of Psychiatry, London Marie Nixon Research Network member, MS Society Stuart Nixon Trustee and Research Network member, MS Society Gillian Parker Professor of Social Policy Research; Director, Social Policy Research Unit, University of York Jayne Spink Director of Policy and Research, MS Society Mark Taylor Trustee (former), MS Society Sue Thomas Nurse Policy Advisor, Royal College of Nurses David Wraith Professor of Experimental Pathology, University of Bristol MS Society Research Network The MS Society would also like to acknowledge members of the Society s Research Network who took part in focus groups and provided feedback during the writing of this report. Their input, expertise and enthusiasm informed and shaped the recommendations contained in this report. The Society would like to thank: Paul Bull, Gus Alexiou, Siobhan Gilmour, David Smith, Rita Baillie, Paul Baillie, Jenny Hall, Rebeccah Rushworth, Petula Macias, Kate Atherley, David Taylor, Janet Taylor, Lynn Ashby, Chetan Shah, Sally Bailey, Carole Bennett, Mike Crowther, Michael O Sullivan, Steve Rowlands, Di Hopkins, Patricia Slater, Nigel Bullock. Research Strategy

26 Annex Summary of the main points from the Research Network Focus Groups, By Gabby Ansems, May 2008: We held two focus groups with 10 Research Network members attending in Birmingham and 14 attendees in London to define specific short and medium term priorities within the seven research priorities in the MS Society Strategy for The groups covered all areas of research, however the primary focus was on symptom relief and social and economic research as we felt that guidance from research network members on these areas would be most helpful. Here is a summary of some of the most novel ideas discussed in the basic and translational research, areas of symptom relief research that were brought up by both groups and a summary of the social and economic areas that were discussed. If you would like the full list of symptoms that were raised in the focus groups please contact researchadmin@mssociety.org.uk Basic and translational establishing better ways of diagnosing, monitoring and predicting the development of MS the appropriate time to begin drug treatment risks and benefits of early treatment. combination therapy (drugs) how treatments work in synergy with each other: safety, benefit 24 Research Strategy

27 Symptom relief There were approximately 20 symptoms listed between the groups. These 10 were mentioned in both groups with the first six prioritised by the Birmingham group as being the most important symptoms: fatigue bladder and bowel problems cognitive problems (e.g. memory, word finding capability) variation between people with MS, are there effective strategies for coping? depression, mood swings, psychological impact of MS pain characterising different types, relief exercise/hydrotherapy what works muscle spasm/tremor balance optic neuritis and eye sight, including wobbly vision diet is meat eating linked with increased incidence of MS? Looking at the geographical variation in MS and compare with diet Research network members found the prioritisation of specific symptoms difficult. They noted that priorities for any individual would reflect the symptoms experienced at that point in time. It was suggested that a potential first step would be systematic mapping of anecdotal and research evidence for symptom relief interventions. This would identify gaps in research or services for example widely used interventions with strong anecdotal but no research evidence, or interventions with strong research evidence but no widespread adoption. Care and Services Research audit of available services: e.g. physiotherapy/exercise therapy, housing, advocacy, counselling accessibility, quality and cost including cost to society of not providing such services ability to access help in different areas of the country e.g. access to work scheme, disability living allowance, care assistance direct payments and individual budgets how are these working for people with MS? specialist services vs. appropriate universal services e.g. physiotherapy vs. accessible gyms and leisure facilities impact of MS lost lives housing isolation employment: number of people still in employment, impact on work-life balance retaining employment entering into employment carers and young carers transport other social impacts of MS research into effective co-ordination between services measuring understanding/awareness of MS in professionals, employers (potential and current), businesses, general public, children and young people coping and adjusting to MS as the disease progresses. This would provide useful guidance in identifying priority areas and potential opportunities for commissioning effective research. Research Strategy

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