Monday, 19 February 2018

Here comes #ChariotMS. Or does it?

Is the #ChariotMS study worth funding? Is upper limb function worth saving in people with more advanced MS?



The objectives of our #ThinkHand awareness event, which we are hosting this Thursday night, is to celebrate hand function in people with MS and to promote #ChariotMS to the wider community.






It's all about you.

Do you believe #ChariotMS is worthwhile supporting?

Should some of the money spent on progressive MS be used to fund a UK wide study that may deliver real change for people with MS in wheelchairs, and within a defined time frame: five years.

This is how painfully long it will take to complete a clinical trial to test whether cladribine is effective not only in early/relapsing MS - we know it is highly effective there - but also in people with advanced MS. 

In six weeks, we will submit our funding application to the UK's NIHR to answer this question. We know, the NIHR will only fund a trial that is supported by the majority of pwMS and MS experts in the UK.

The feedback we have had so far was very constructive and positive, and we are thrilled many of our friends and colleagues have pledged to support the project and enrol people with advanced MS.

Now it's over to you (again) - what do you think? Please have a look at our outline and let us know.

Thank you!

24 comments:

  1. Definitely worth it! :)
    Great to see all the centres (tbc) across the UK (including near me) and MS Society involvement. Is Thursday open invite? Have a pal in local MSS group in wheelchair who might be interested - would be good focus for group fundraising. Is Craig playing?

    ReplyDelete
    Replies
    1. Unfortunately, Craig has a different engagement (which is great as it shows he keeps playing!), so he won't be there. ProfG has the latest on numbers, I believe it's getting a little tight, at least on paper(?).

      Delete
  2. Hi
    I have a few questions. Where is this event On Thursday evening taking place and is open to anyone? Have the people who would be used in this trial already been recruited?

    ReplyDelete
    Replies
    1. The event on Thursday is over-subscribed by now, so I don't think there are any places left. No participants for #ChariotMS have been recruited yet as the trial needs to be funded first. This post is part of our ongoing conversation about the project, which has been developed with involvement of pwMS from it's earliest stages, so we are quite confident we're doing the right thing. But whether we'll be able to convince funders is a different matter. But we're hopeful.

      Delete
  3. As a pwMS I support this trial. I am exercising all my body, including the 9-hole Peg Test, daily to try to preserve function in both upper and lower limbs. I think that upper is even more essential in preserving independence. But I am becoming more and more aware as I do the test, just how much the brain is being used, to control the hands. Short-term memory is something I really want to stop getting worse. Does that progress alongside the physical disability, I wonder?

    ReplyDelete
    Replies
    1. You are describing an experience we witness regularly that along with increasing physical problems, memory & information processing (speed, multi-tasking) are suffering. With age other factors contribute, however a significant part of this is due to MS.

      Delete
  4. Are you going to use Mavenclad or generic cladribine?

    ReplyDelete
    Replies
    1. We'll be using the injectable preparation. From conversations I understand this is not a priority for Merck. After all it's a bit high risk given uncertainty will regulators accept upper limb function as primary, project will take 5 years, patent life considerations, etc.

      Delete
  5. Never to late to treat!
    Alemtuzumab also would be an option or wouldn't?
    http://n.neurology.org/content/88/16_Supplement/P5.356

    ReplyDelete
    Replies
    1. Only 15 patients in that study, but you're right there's several options. The #ThinkHand campaign isn't only about #ChariotMS, but rather the concept that preserving upper limb function is of value & possible, so let's try and prove it.

      Delete
    2. If confirmed it shows the "window of therapeutic opportunity" that was based on comparing - uncontrolled - data from alemtuzumab use in relapsing versus progressive patients is wrong. There are many "windows"; if you can run, take the "running window", if upper limb function is retained, take the "upper limb window" (and probably also good for cognition, swallowing, speech...).

      Delete
    3. if a company comes to the table we are happy give it a try. If we have to fund the trial we couldn't afford to use a DMT.

      We tried to do a head to head with alemtuzumab. On the form it asked how much it was going to cost the NHS we said it would save £34,000,000. The NIHR grant agency didn't believe it.

      Duh! it was 600 not having to take alemtuzumab at £58,000,000 so 600 x 58,000 = £34,800,000 but with need for steroids, anti-histamines, blood test every month urine every three months, 20% get thyroid problems and 3% need thyroid removal then there is kidney problem so about £80,000-£100,000 = £60,000,000

      Delete
  6. Thanks DrK and team for putting this together. I really hope the MS Society throws their weight behind this. Recently got a message they are raising £100,000,000 for progressive MS.

    ReplyDelete
    Replies
    1. although I'm biased support for this initiative cannot fail to show some benefit

      Delete
  7. We're actually talking to MS Societies on both sides of the pond, and they're really supportive but obviously have other commitments too, so we're hopeful they will support our bid.

    ReplyDelete
  8. Maybe a video with wheelchair patients interviewed would sensitize public, and could be used on the internet to bring new donators.
    That kind of publicity can put pressure on Merck to join the campaign too -hopefully.

    ReplyDelete
    Replies
    1. We're working on our 3rd video as we speak. The #ThinkHand campaign won't rest any time soon.

      Delete
  9. I hope this succeeds on both sides of the pond - I say that as someone with 2PMS who values his upper body ability and believes that everyone has the right to that function.

    ReplyDelete
  10. ThinkHand - or more broadly, PreseveWhatYouHave - is absolutely essential. Thank you for taking up the cause. Hope it succeeds on the funding front, and then on recruitment, etc.
    More than that, I hope the eventual results are positive

    Now a related question: we've had the recent posts about how DMTs lose their effectiveness after the age of 50.
    What do you say about those findings in relation to the ThinkHand campaign?

    ReplyDelete
    Replies
    1. We have known for some time that the efficacy of DMT based on EDSS will diminish with age. Am I surprised? No, because as a rule increasing age comes with longer disease duration, which is predictive of neuro-axonal loss (http://onlinelibrary.wiley.com/doi/10.1111/bpa.12516/pdf). As yet, we are unable to revert this loss. The partial recovery we see in some people with advanced MS is based on (i) restoration of function of axons that have survived new lesion formation (remyelination, other mechanisms) and (ii) reorganisation of the CNS where intact parts take over function from parts that were damaged. Once this “reserve capacity” has been lost for specific functions (often: the legs), we need to shift our focus on functions where such capacity still exists, and that is – as a rule – more often than not the case in your upper limbs. Length-dependency and neuroanatomy provide hints on why that is (https://www.ncbi.nlm.nih.gov/pubmed/28283111). We therefore not only need to manage our expectations from “any” treatment at say the age of 60 and a 30 year history of MS, but also convert these concepts into trial design and outcome assessment. That efficacy based on EDSS diminishes with age does not surprise anybody who has been working in the field for some time. We need to look at functions where there is reserve capacity, and against the backdrop of length-dependency, neuroanatomy, and the capacity to reorganize, the upper limbs are an obvious choice (#ThinkHand!). Will the effect of age on drug efficacy be the same when efficacy is measured using 9-hole-peg-test & ABILHAND rather than EDSS? Let’s see.

      Delete
  11. Yes, I hope it’s successful! I hope I can wait 5 yeArs!

    ReplyDelete
  12. I definitely support the trial. How will anyone know whether the theory is correct unless it's tested????? So, yes, please, bring it on

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.