Have Your Say in Setting Research Priorities

Setting MS research priorities

The UK MS Society is leading a project to put people with 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.

This project aims to find the top 10 unanswered questions in MS research.

Help them and Have Your Say. 
This is Open to Academics, Neuros and MSers
  • Help the MS Society prioritise future MS research
       They do not like my suggestion of giving it all to us

Until now, there has been an almost limitless choice of potential MS research projects to fund.
This year the MS Society plans to change this. In partnership with the James Lind Alliance (JLA) the MS Soceity will be changing the way they set MS research funding priorities.

The JLA is an internationally recognised, independent, non-profit organisation who will help identify and prioritise unanswered research questions in MS. They specialise in bringing together patients, carers and health care professionals such as nurses and neurologists to do this.

They hope to gather unanswered research questions in MS that are important to all of these groups. This could include any area of MS, including treatments for a particular symptom or support for day-to-day life with MS. The JLA will guide this work to produce an unbiased result.

  • Why are we doing this?

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.

People affected by MS are at the heart of everything the MS Society does. The research we fund should answer the questions which are most important to them.

This 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.

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

  • How can You get involved?

Do you have an unanswered question about the prevention, diagnosis, prognosis or treatment of MS?

They need people with MS to share questions about what affects their MS and their life. We also need carers of people with MS to tell the MS Society what is important to them and the people they care for.

We need health care professionals who work closely with people with MS, such as neurologists and MS specialist nurses, to use their experience to submit questions that are important to treating and supporting people with MS. 

Stand back I can see Prof Gs head doing overtime

  • Tell them your questions

The survey is open. Details on how to submit can be found in the information sheet.

Look out for opportunities next year to vote for the questions and to be part of the group who narrow down the number of questions.

  • The process

The JLA will work with the MS Society until they find the top 10 unanswered questions in MS research.

Question gathering​. A steering group made up of people with MS, carers and healthcare professionals will oversee a large scale survey to collect questions from anyone who has an interest in MS.

Reviewing existing research. The project steering group will review previous research, such as literature reviews or treatment guidelines, which may have identified important questions. These will be included along with questions gathered in the survey.

Sorting. Questions gathered in previous stages will be sorted and grouped into topic areas by the JLA team, then checked against previous research to see if they have already been answered.

Prioritising. In March 2013, people will be able to vote for the questions most important to them. This stage will reduce the amount of questions to a manageable number.

Narrowing down to 10. A small workshop to discuss the questions will be held in April 2013. Attendees will express their views, hear different perspectives and think more widely about MS to ultimately identify the 10 most important questions.

We will communicate the 10 questions widely, and encourage researchers to work to answer them.

Ultimately we hope to be able to share these answers with the MS community as soon as possible, to make a difference to the lives of people affected by MS.

Not all submitted questions will become a research priority, but we won’t rule out suggestions and grant applications outside of these priorities. 

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

  • Steering group

The MS Priority Setting Partnership will be 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, 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 – Specialist MS nurse

Richard Nicholas – Consultant neurologist, London

  • Partners and Supporters

MS Society

UK MS Specialist Nurses Association

MS Therapy Centres

Association of British Neurologists

About the author



  • Looks like decades more work for MS researchers.

    I'd ditch research into genes and quality of care. Research priorities should be (I) stopping progression and (II) repair. No more placebo trials. No more work on EAE (sorry dr mouse – you could be on the dole). No more works looking at CRAB drugs. The only research that should be funded is results based and payment by results. Why are huge grants paid and nothing is delivered?

    • If this is what you think have your say and answer the call the links are there please use them.

      This was not meant to be agony aunt corner to say stuff here, but it is your opportunity to try and shape where resources are put. Put as much effort into answering this initiative as you do posting here, because here it is wasted effort.

      You are living in dream world. Results based payments on grants is ridiculous, all you would attempt to get funded is low risk, dead certs. So where is the innovation and break throughs in that? Most Nobel prize winners get their due rewards many years after their work is published. The benefits are typically realised by others, not the original inventors..e.g. Kohler and MIlstein and monoclonal antibodies.

      No more placebo trials..so how do you know your drug works? I was hearing the belief of placebo effects of certain treatments only yesterday.

    • no more placebo trials, no more EAE, payments for results, …: This stuff has been posted many times and it makes no sense. Everyone agrees the current system needs change but your ideas are no use.

      Adding a few points to what MD wrote-

      No research into quality of care: ignore all the MSers who are badly in need of better care, let the therapists etc research other diseases instead of MS

      No research into genes: people who do gene-related work will move to other diseases and ignore MS

      No more looking at CRAB drugs: it will be very good if it was possible to identify in advance who they will help

      Payment based on results is the stupidest.
      -If you know what the result will be then why work on it at all.
      -People who are sure of something which has not been proven are often wrong.
      -More scientists will manipulate or make up data to get the results they want

  • Agree with above. Fundamental issue is the role of academia. Academic researcher rarely come into contact with disabled MSers. Their interest is number of publications / citations. QinitiQ develop cutting edge technology for the military – very clear focus to protect the lives of British service personnel. They are boffins / academics, but not in it for their own glory. I want those involved in research to understand what they are doing it for – it's way more than publications and conferences. You only have to read a selection of the weekly research papers to realise why MSers are not getting real benefits. You could take a topic like neuro-protection and get 50 research centres across the world collaborating. But the silo approach and the eye on a patent means this doesn't happen. Whole research structure is wrong. Cancer research a much better model – at least it's delivering tangible results and advances every year.

    • ame response as above.

      You have government/employers pulling us one way and your vision another way. Get 50 centres across the world collaborating..good idea if you can get 50 groups to work together. This is like an EU grant, unfortunately large parts of the resource is spent on travelling to get the group together.

      A cancer trial is somewhat different….treatment effect and cancer goes, easily identified outcomes especially if it is survival. Cancer kills quick but the MSers life expectancy is reduced only by about seven-eight years on average therefore the ethical bars are very different.

      Furthermore look at the budgets those of cancer dwarf the amount spent on MS and they piss money away..best not go there!

  • Yeah, I've been coming to this blog for years now and not one therapy for progressive MS has materialised despite it being a research priority area. This project outlined above seems like another opportunity to kick the ball into the long grass.

    There is no end in sight when it comes to MS other than the end of the MSer.

    • If you have been coming to blog for years you will realise that there has not been enough time between the start of this blog and now to do a trial for progressive MS even if it was the best thing since sliced bread.

  • Perhaps the priority is to do research is which answers questions. We are nearly in 2013, but:

    no one knows the cause;
    the jury is still out if is primarily neuro-degenerative or inflammatory;
    EBV has ben suggested as a cause /trigger for 40 years, but no one can say yes or no;
    no one knows what drives progression.

    If MS research was a student I'd give it D- with a 'must try harder'.

  • Sick and tired of research initiatives – seen so many come and go e.g. Promise 2012.

    Surely any MSer would ask for treatment which stopped the becoming more disabled. Can't believe that the MS research world needs to be told what the priorities shoukd be.

    Delivering a cure would be good but for MS researchers this would be the equivalent of turkeys voting for Christmas.

    • MS researchers would be happy with a cure but would pharma?

      Researchers can research something else, many of us live with short contracts and when it comes to an end we move on, or sideways, give up, etc. MD2 has been their already and many of in fact most researchers have no employment stability. I have not worked on MS for all of my life. You can use your skills elsewhere. I now do very little pure immunology but that was my background. science is an increasingly bleak career path to be an academic. However much of what we post is from clinicians doing research, their day job is seeing people with diseases, without research they still have their day job. Without the fluffy stuff we struggle for content and no content then people do not come back.

      From our promise 2012 experience we have done a lot, we have had trials and have more on the go as we speak and more are planned.

  • Funny that you're saying it Mouse – I talked to Mum yesterday that pharma maybe even has the knowledge what causes MS and doesn't disclose it for financial reasons perhaps because the drugs for cure are already there cheap and well-known. I'm at a stage where I don't care about cure – would be happy to have progression stopped/slowed and atrophy sorted out and that's fine.

    • I talked to my mum recently too and she said I was a fat rat In a wedding photo all she could was my gut so this is why we need to sponsor the MD donate the pounds to loose the pounds

    • Gosh, is your mum related to Joan Crawford by any chance. No wonder you seek solace with the rodent kind, and execute them shortly afterwards in the name of good science.

      There is far too much white noise in MS research and I, unlike other people, welcome the decision to streamline research initiatives in a bid to reduce replicated studies and tangential medical focus. DMTs and CCSVI have wasted too much in the way of resources. What is needed is better ways to live with disease and make the most of a bad situation, that is until remyelination strategies materialise.

    • Just give all your cash to Edinburgh Cambridge and Bristol, why not try to prevent MS for future generations?

      Not sure UK MS Society has spent much with regard CCSVI the Candadians have on the other hand spent millions

    • Agreed, the best way to cure MS is prevention. The Goverenment needs to seriously up vitamin D3 intakes for all babies. Do that and methinks MS will be wiped out within a generation.

      MousedDoc, even you know that remyelination is the only real treatment sought by every MSer out there. You guys should run a survey asking blog readers if they hanker a slowing down of progression or a way to restore remyelination, and I bet remyelination wins hands down. You may say that remyelination therapy is a long way off but it's not like any of your compounds to slow nerve damage are anywhere near market. In terms of giving cash I think we should all donate to Franklin, ffrench-Constant et al.

      DMTs have been the biggest hoodwink in modern medicine. We should campaign to get them off the NHS cost list because they do not do what is stated. These drugs kill in some cases.

    • remyelination should be a way to slow progression so a vote for remyelination is a vote for slowing progression.

      Our compounds are already in market, they just need to be repurposed for MS

    • Remyelination won't work in isolation. You still need to target the cause of the disease otherwise the new myelin will simply get damaged and destroyed. In fact we know this is happening already. there is very good evidence on both MRI and from pathological studies that remyelination occurs in MS, but eventually fails. The other side of the coin is that if we find the cause of MS and treat that upstream we won't need remyelination strategies. The diseases most likely to benefit from remyelination strategies are dysmyelination or genetic syndromes. In fact the first remyelination trials are currently happening in these diseases.

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