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Which research should we update you on?

The MS Trust has an email alert which highlights research in MS published in the preceding week. How do we choose what to include? And are we getting it right? This is how it works at the moment.

A huge amount of research on MS is published every week. Even if we only include what gets published in scientific and medical journals and then listed in Pubmed, a specialised search engine for medical journals, there are typically between 100 and 200 new publications every week. Different people will be interested in different areas of research so the question is how to choose what to include to suit most people most of the time. Also, how to produce a list that isn’t so long that people can’t face looking through it all.

This is what we do:

  • A selection is chosen using some flexible guidelines. The more a piece of research fits with what we’re looking for, the more likely it is to make the final list. We particularly like to include research which:
  • Is high quality
  • Is innovative
  • Will make a difference to people with MS now (or very soon)
  • Presented in an understandable way
  • Has huge potential to make a difference, even if it may take a lot more work (or time)
  • We also face a few dilemmas:
  • We have a really varied audience which includes people with MS, friends and family and health professionals. Should we only include research items that interest most of them or should we have a few that use more technical language or require specialist expertise?
  • Should we always choose items that will help lots of people or should we have some that will have a high level of impact but only for a small number of people?
  • Should we keep away from subjects that may be difficult to read about for someone newly diagnosed but really important to someone who is severely affected?
  • Should we keep to “good news” stories? Not all research is good news – for example, some clinical trials do not show any benefit. Do people want to know about these?
  • Are there topics that are off limits? For example, is it depressing to learn about how common depression is in MS? Or is it important to acknowledge this and then provide suggestions on tackling depression?

You can take a look at this week’s Research Update here. Every week we pick one or two topics to highlight – this week it is poor sleep in people with MS. The research paper is summarised, along with some background information on the topic. At the end, further information is offered and may include things that someone could do immediately to help, in this case, with sleep problems.

Overall, we try to offer a range of topics over the year, to keep people up to date with the latest research and to provide additional information that will help people right now. Are we getting it right – let us know what you think.

If you would like to receive our Research Update email alert, you can sign up here. You can unsubscribe at any time.

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22 Responses to “Which research should we update you on?”

  1. Paul Peignen says:

    I would like to know more about stem cell research and the possibilty of taking part in a trial or the possibility of having this treatment

    • Audrey Hamdi says:

      Two years ago I was chosen to take part in a stem cell study called the H.A.L.T. study using my own stem cells.
      My neurologist pushed for this study because I was relapsing every month and I only seemed to respond to chemotherapy. I haven’t relapsed since.
      I as well would love to see more research on this type of study.

    • Robert J Blackhall says:

      I would very mutch be interested stem cell trial.
      I have PPMS ,although still able to walk it is a struggle and quite a number of other problems.
      I am 67 and a 10 year wait might be to late.
      I live in hope

      Yours Rob

  2. Sarah Gillanders (Neuropsychologist) says:

    Just a quick message to say that I read your research updates every week and find them invaluable in keeping up to date with the latest literature in MS. Thank you very much for all your efforts. Merry Christmas! Sarah.

  3. Lesley Hampson says:

    I think your research emails are invaluable to any one with MS. Progressive MS trials are of interest to me. But think you cover most areas well considering the amount that is going on. Thank you.

  4. Susan Crerar says:

    Hi
    I have been on Fampyra since Feb 2012 with good results. Helps with energy, ability to stand longer, strength, well worth the investment.
    I have been in email contact with Biogen Idec (drug company) and they say that they are waiting on the funding application in Australia before approaching Pharmac in NZ. They will be contacting MS NZ for your input.

    • Phil says:

      Might help a third, which is good. Other two thirds will get no benefit, or, as in my case, get knocked backwards for a while. Anything is worth trying, though. Just don’t get your expectations up too much, as is is annoying when it does not help!

  5. bill says:

    1 am interested in any drug that will help me with walking and balance,thank you bill.

  6. Janet Hebson says:

    I enjoy the research emails, I’m interested in new information that is available, even if it does not directly apply to me. I think it helps stimulate the brain, I also enjoy learning.

  7. Carol Fox says:

    I am interested in the correlation between fatigue and balance, particularly as it affects me a lot. I read the article with interest. I would like to see a wide variety of articles on all sorts of MS related problems including ones that may not appeal to the newly diagnosed.

  8. Nigel Bartram says:

    I find the research update very helpful. I recently picked up on the yoga research in Germany which found certain exercises helpful in bringing some measure of control to the problem of incontinance. I’ve started classes and the early results are very positive (I’ve had primary progressive for 9 years).

    Regarding how you cover “bad news” I strongly believe in the unvarnished truth. There’s absolutely nothing to be gained by hiding things.

  9. Definitely stem cell research and results!!!!

  10. Giselle Rozzell says:

    I have primary progressive ms since mid nov 2012 I am interested in research drugs for this.Tiredness is my major problem, I dont work now.

  11. andy says:

    is the there a stronger treatment than tysabri at moment tysabri is working well but I still suffer with my legs

  12. Jane Barnes says:

    I would like to know more about stem cell research and the possibilty of taking part in a trial or the possibility of having this treatment

  13. christine says:

    all research findings to help all aspects of secondry progressive ms

  14. christine says:

    Would love to know all about fampradine and if it can help with balance and when it becomes available in West Yorkshire England.

  15. Vic Gardner says:

    What on earth is going on with Biogen’s BG 12 (Tecfidera) which is potentially the first choice drug for relapsing remitting MS?
    A decision on it is buried somewhere in the European Commission and our local MEP Julie Girling has been trying to find out for three weeks what is going on. Is the trust actively pursuing this? Tecfidera was approved by the Federal Drugs aministration in March and US patients have had the benefit of it for six months. The man who is supposed to have the answers is Frederic Vincent and his email address is frederic.vincent@ec.europa.eu. He didn’t answer our email. Until the Commission gives the goahead the European Medicines Agency cannot approve the drug for the market and NICE and the Department of Health cannot act. It is surely not right that those who could benefit from this therapy should be left to suffer in this way.

    • Lynn, Information Officer at MS Trust says:

      The situation with Tecfidera is a bit more complex as Biogen Idec has requested that patent issues are resolved.

      On 21 March 2013, the Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion, recommending the granting of a marketing authorisation for the medicinal product Tecfidera 120 mg and 240 mg, gastroresistant hard capsules, intended for the treatment of adult patients with relapsing-remitting multiple sclerosis.

      http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/002601/smops/Positive/human_smop_000498.jsp&mid=WC0b01ac058001d127

      However the licensing has been delayed. As the drug is based on an existing compound used to treat psoriasis, the manufacturer is concerned that the licence would not protect them from other companies making cheaper versions. The EMA’s final decision has been delayed to get clarification on this issue. The delay is not expected to affect when the drug becomes available on the NHS.

      The decision making process was put on hold at the request of the Biogen Idec, for reasons of regulatory data protection.

      Tecfidera has been through the preliminary stage with NICE and we are hoping that it will become available in January 2014. The MS Trust have responded to the NICE appraisal http://guidance.nice.org.uk/TA/WaveR/152 and have been involved in the whole process from framing the scope of the appraisal, submitting a statement detailing why we think a new drug should be made available and attending appraisal committee meetings and responding to decisions made by NICE.

      I hope this helps,

  16. Cathy will says:

    I have ms and crohns and have been on Imuran,cop axon,gilenya , prednisone and just want to find something that doesn’t make the other disease worse.

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