Wednesday, 8 August 2018

#ThinkHand - What happened to #ChariotMS ?



Yes, what happened you might ask, and all I can say is: A great deal.




The UK National Institute of Health Research's EME board has elevated #ChariotMS from the brawling crowd (stage 1) to the boxing ring (stage 2), and the reason they gave was this:

"The Board note that this is an important research question."

No further patting on the back though, since the whole team is currently working out how best to address their nine other comments before deadline in three weeks time. Whoever has worked on a large grant application knows that this is an extremely testing phase; you feel so close, and yet so far from getting the means to undertake a study. I know many people with advanced MS and their families and friends are desperate for #ChariotMS to finally kick off, however the process is painfully slow and at times feels a little Kafkaesque... But hey our fighting spirit ain't broken!

What needs to be addressed?

The Board wants to know whether the 9-hole peg test is sensitive enough, robust enough, meaningful enough, essentially *good enough* as a primary outcome.

The Board is questioning our sample size and power calculations.

The Board wants to know how committed our supporters are (charities & industry), and whether we're playing fair.

Above all, The Board wants us to reduce cost. To the degree that we ask ourselves "How can a study be done for so little money?"

But one important trait you have to develop in academia is to absorb pressure and turn it into a challenge. And what's great about BartsMS and our collaborators in London, and across all nations of the UK, is they are all pulling together doing exactly this - challenge themselves and each other to make #ChariotMS happen.



The team knows people with advanced MS can't take no for an answer.

Thanks for bearing with us, and for support:

4 comments:

  1. Excellent to see this on here and the progress it has made. It is also great to see the NIHR acknowledging this as an important research question, the scope for health economic benefit for them should be enough alone...

    Surprised at your comment regarding cost, eme normally fund to about 2.2 million?
    Does this study have a lot of excess treatment costs because folk with advanced MS don't normally get much care? Kind of sad if that's the case...

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    1. The cost of transport for people with advanced MS is greater, but we were able to effectively reduce the number of visits, which helps bring it down. Cost also depends on how many secondary & exploratory endpoints you include, something EME likes, but the balance has to be right. We're adapting the study & responding to their comments big time, but in the end it'll be their solemn decision, so keep fingers crossed if you can (#ThinkHand!).

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    2. I hadn't considered transport costs...

      I agree with regards to balance. There seems to be a plethora of basic science funding within MS but this is about using outcomes measures that are meaningful to the individual. It should be about your 9HPT and PROMS, with mechanistic studies that are easy on your budget.

      Very best of luck with it

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