Breaking boundaries in MS research. Sorrel Bickley Research Communications Manager

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1 Breaking boundaries in MS research Sorrel Bickley Research Communications Manager

2 Disclaimer Research Team are not medical professionals If anyone is worried about the treatments they are taking speak to your healthcare professional

3 What is MS?

4 Early on in the condition myelin can repair itself As people age, the body looses its ability to repair myelin No licensed therapies that promote myelin repair

5 What is progression?

6 How does the body attack myelin? The immune system 1. Immune cells patrol the body 2. Cells travel to the infection site 3. Immune response happens 4. Infection is cleared (leaves scars) In MS These immune cells mistakenly attack myelin They leave scars where they have attacked

7 The immune system and MS Blood-brain barrier

8 Our Research Programme

9 Where were we 20 years ago? No disease modifying treatments 1 gene linked with MS Little progress in understanding environmental factors Symptom relief research was limited

10 Where are we today? 11 licensed disease modifying treatments 110 genes linked to MS Increased understanding of risk factors Positive phase 2 secondary progressive MS clinical trial New symptom management treatments developed (e.g. FACETS)

11 Investment in research Largest UK charitable funder of MS research: 4-5 million per year Over 148 million invested since 1956 Supporting 62 projects, totalling over 15 million Fund top UK researchers carrying out world-class research

12 Our research strategy Focus on progression Understanding myelin repair Impact of MS Symptom management New ways of supporting research (collaborations) Continue to involve people with MS

13 Top 10 research priorities Partnership James Lind Alliance, MS Society, MS Therapy Centres, ABN, UKMSSNA Top 10 research priorities shared by people affected by MS and health care professionals 1084 questions submitted 669 voted to get to a top 30 Top 10 decided at a workshop

14 Top 10 research priorities 1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS? 2. How can MS be prevented? 3. Which treatments are effective for fatigue in people with MS?

15 How will we beat MS? Cure Cause Symptom relief Services Biomedical research Care and services research Improved diagnosis, treatments, services and support

16 Biomedical research

17 Cambridge & Edinburgh Exploring how remyelination can be encouraged Developing potential treatments and testing them in the laboratory Recent remyelination breakthroughs Development of small myelin repair therapy clinical trial

18 MS Society Tissue Bank Funded by MS Society since 1998 World class facility Over 280 projects so far Supports treatment development Understanding causes

19 Queen Square MRI Unit We have supported MRI research since 1982 New 3-Tesla scanner purchased in 2009 (more detailed images) Support progression research and clinical trials

20 Causes of MS We don t know the cause of MS A mix of genetic and environmental factors Genes and family history Vitamin D Viruses Smoking Obesity +

21 Vitamin D MS more common away from the equator Several studies suggest vitamin D deficiency plays a role in risk of developing MS but not clear how We don t know: 1. if vitamin D will help prevent or treat MS 2. what dosage is needed 3. what dose is safe 4. if supplements work If you re worried about your vitamin D levels, speak to your doctor

22 Genes and MS No single gene that causes MS Studies published in 2011 and 2013 found over 110 genes linked with MS Many of these genes play a role in influencing the immune system

23 Stem cells what are they? Unspecialised cells - make more of their own - make many type of cells Types - embryonic - adult - induced pluripotent

24 How could stem cells help in MS? As treatments 1. Provide neuroprotection - prevent further damage to nerves - myelin repair 2. Repair nerve fibers For research

25 Stem cells what s next? Funding partnership with UKSCF to fund new projects including phase 2 clinical trial Mesenchymal stem cell trial results - small phase 2-10 people with SPMS - tolerated - visual improvements

26 Care and services research

27 The MS Register World leading MS register Revolutionising our understanding of MS Supports (1) Research (2) Service development (3) Campaigning

28 MS Register results

29 Botox for Bladder Botox injections shown to be a safe and effective treatment for overactive bladder Early clinical trial funded by MS Society Effective for around 10 months Now licensed in the UK

30 Fatigue management FACETS: group based Cognitive Behavioural Therapy energy effectiveness (lifestyle decisions and ways of working) rolled out across the UK

31 Adjusting to MS Nurse led, telephone based therapy Positive results in clinical trial - reduces distress - improves quality of life - lasts for 12 months Part of MS healthcare package? Professor Rona Moss-Morris

32 Exercise and MS Pilates with wheelchairs Accessible form of exercise Improvements to quality of life and health Wii TM develop for pwms use at home small clinical trial EXIMS practical exercise programme Tailored to individual 12-week clinical trial Improvements to QoL

33 Progressive MS

34 What is progression?

35 Neuroprotection Neuroprotective therapies urgently needed Aimed at preventing damage to nerves Could slow or halt progression Two trials to protect nerves: amiloride trial ( 377,000) phenytoin trial ( 250,000)

36 Partnership between many organisations and MS researchers (MS Societies from UK, USA, Italy, Canada, Australia and MSIF) First partnership of its kind in MS Coordinate progressive MS research on an international scale Fund research difficult for an individual MS Society to fund Speed up the development of treatments for progressive MS

37 Dr Alan Thompson (Chair of the Alliance Scientific Steering Committee) I don t think it is an understatement to say that this is the most ambitious project in the history of progressive MS. 22 projects funded in 2014 Bigger, more ambitious projects getting underway next year

38 Simvastatin cholesterol lowering drug phase 2 trial 140 people with SPMS slow brain atrophy and disability progression First positive progressive MS trial in recent years

39 MS SMART Groundbreaking clinical trial Three different drugs against a dummy tablet 440 people with SPMS sites in England and Scotland Jointly funded by the MRC and the MS Society

40 So how long does it take? 17 years from an idea to a successful treatment! 3 years: from an idea to a project actually starting! EARLY RESEARCH: TESTING THE IDEA Clinical trials take at least 7 years to complete CLINICAL TRIAL: STAGES 1-3 LICENCING & MONITORING Researcher has an idea and decides how to test it Researcher applies for funding Researcher applies for ethical approval Staff recruited to project. Project starts Results are reported: Good - project moves on Not Good - go back to start Phase I clinical trial Phase II clinical trial Phase III clinical trial If trials are successful, researcher applies for licence Long term safety and monitoring 6 months 12 months 6 months 6 12 months 3 6 years 12 months 1 3 years 2 3 years 12 months Many years

41 Get involved in research Clinical trials: MS Society website research pages 1. Be in a study 2. MS Register 3. MS Society Tissue Bank 4. Research Network

42 Find out more Research Matters Research Blog MS Society you tube channel

43 Questions?

44 Our strategy 2015 to 2019

45 Our strategic goals 1. Effective treatments 2. Responsive care and support 3. Preventing MS 4. Quality information 5. A strong community, independent lives 6. Supporting families and carers 7. Greater certainty about the future

46 Our strategic approach Working alongside people affected by MS Working collaboratively Prioritisation Impact Inclusion UK-wide, national, and local approaches