Putting people affected by MS at the heart of research

Three people talking

In 2012 we began a project to put people affected by MS at the centre of setting research priorities.

It is crucial that research into MS answers the questions that are most important to people affected by MS. 

Through a partnership with the James Lind Alliance, we aimed to find the top 10 research questions important to people affected by MS and healthcare professionals. After a year of extensively canvassing the views of a wide range of people, we have established the top 10 priorities for MS research.

The top 10 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?
  4. How can people with MS be best supported to self-manage their condition?
  5. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
  6. Is Vitamin D supplementation an effective disease modifying treatment for MS?
  7. Which treatments are effective to improve mobility for people with MS?
  8. Which treatments are effective to improve cognition in people with MS?
  9. Which treatments are effective for pain in people with MS?
  10. Is physiotherapy effective in reducing disability in people with MS?

Thank you to everybody who contributed to this process. This wouldn’t have happened without you.

We will now be working hard to ensure these priorities are addressed by research. As it stands, 75 per cent of our current research reflects priorities in the top 10, which is a great start. For example we are funding MS-SMART, a ground-breaking clinical trial investigating whether three drugs can alter progression in people with secondary progressive MS

These priorities will complement our existing research strategy. We will continue to support research into the causes of MS, and treatments and care for people affected by MS.

This is a major shift in setting priorities for MS research. Beyond the MS Society it is hoped the top 10 will help researchers select topics when developing applications, and influence the decisions of other research funders. 

We will be keeping you updated on our work to address these research priorities.

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Why are we doing this?

Since 1956, we have invested over £144 million of today’s money in research. This has advanced our understanding of the condition, improved diagnosis through our investment in MRI research and supported the development of treatments. This includes funding early clinical trials of Botox for bladder problems and alemtuzumab, which may soon be licensed for people with relapsing-remitting MS.  

Until we find a cure, we’ll continue to fund world-class research to develop the treatments and services that people with MS need. 

But the field of MS research is vast, as is the number of projects that could be funded. It is essential to identify clear research priorities, for ourselves and other funding bodies, so we can support the most important research and make the most out of the money we spend. 

For MS research to have life-changing impact, it is vital funders and researchers focus on what matters most to people affected by MS. 

The JLA is an internationally recognised, independent, non-profit organisation. They have an established, unbiased process of bringing together people with health conditions, carers and healthcare professionals to identify and prioritise research important to them. 

The JLA approach has already produced clear results for other conditions such as type 1 diabetes, prostate cancer and schizophrenia. Priorities identified in this way are now becoming funded research studies.

Our hope is that these top 10 priorities will guide other research funding bodies, as well as our own research programme.

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The process

This is the process we went through with the JLA to find the top 10 MS research priorities:

  1. Question gathering. In November 2012 a steering group made up of people with MS, carers and healthcare professionals oversaw a large scale survey to collect questions from anyone who had an interest in MS. The survey was completed by 507 individuals who submitted 1084 ‘raw’ questions.
  2. Sorting. The 1084 questions were sorted and grouped into topic areas by the JLA team, then checked against previous research to see if they have already been answered. At this stage the large data-set was reduced down to 67 research questions. 
  3. Prioritising. In April 2013, 669 individuals voted for the questions most important to them. The aim of this stage was to reduce the amount of questions to a manageable number for the workshop. Here are the results of the voting survey.  
  4. Narrowing down to 10. In July 2013 a workshop was held to discuss the 30 most voted for questions. Attendees expressed their views, heard different perspectives and thought more widely about MS to ultimately identify the 10 most important questions.

You can read more about the process of partnership in the priority setting partnership protocol.

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Steering group

The MS Priority Setting Partnership was managed by a steering group, led by an independent chair from the James Lind Alliance.

The steering group includes people with MS as well as representatives of patient/ carer groups and clinicians.

  • Sally Crowe – James Lind Alliance (Chair)
  • Karen Chong, Roger Bastow, Gwen Covey-Crump, Paul Bull – MS Society members (people with MS)
  • Nick Rijke, Ed Holloway, Susan Kohlhaas, Mital Patel – MS Society Research Team
  • Grace Hazlett – UK MS Specialist Nurses Association
  • Neil Kemsley – Chair, MS National Therapy Centres
  • Waqar Rashid – Association of British Neurologists
  • Richard Warner – MS nurse consultant, Gloucestershire Hospitals NHS Foundation Trust

Read the minutes of the steering group meetings held at MSNC:

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Partners and supporters

MS Society

UK MS Specialist Nurses Association

MS Therapy Centres

Association of British Neurologists

 

 

 

 

 

The Partnership and the priority setting process will also be supported and guided by:

Ann Daly – Independent Information Specialist

Sally Crowe – The James Lind Alliance

Mark Fenton – UK DUETs

 

 

 

 

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