Tuesday, 28 May 2013

Survey results: brain atrophy in MS

Brain atrophy our next therapeutic target. #MSBlog #MSResearch

"The following are the final brain atrophy survey results. They are very interesting."



"It is clear that there is a knowledge gap, between what you want to know about your disease and what your neurology team are prepared to provide you, or they do not have the data to give you. The only way we are going to get brain atrophy up the agenda is for you to ask your neurologist about whether or not you have evidence of brain atrophy on your MRI. Unless the atrophy is gross atrophy, i.e. visible to the naked eye, most neurologists won't be able to say yes or no.  Brain atrophy on MRI has to be measured using specialised software and normalised to a reference data set, or to an MRI you have had in the past."d
"We at the Royal London Hospital don't get routine brain atrophy measurements. We have however, been collecting the correct data set to allow brain atrophy measurements. This is a so called 3D-acquisition, which will allow us to measure brain atrophy serially in MSers. Why will this be important? I think it will be one of the metrics that we include in the NEDA (no evidence of disease activity) composite. We will not only aim to prevent relapses, disease progression, new or enlarging T2 and Gd-enhancing lesions, but we will also aim to normalise the rate of brain atrophy. Brain atrophy is not a good thing and correlates with a poor outcome so preventing it should benefit MSers."

6 comments:

  1. This is one of those horrible things that you bury your head in the sand about! What's the point of knowig whether oyur brain is atrophying if there's nothing you can do about it? I know I know it all needs to be investigated but sometiems ignorance is the preferred mode of operation...

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    1. Unfortunately burying your head seems to be the only option at times.

      I think as newer treatments become available that decrease the atrophy rate there needs to be a big push to get neurologists and those that sanction payments for treatments not to ignore atrophy as it seems most closely related to disability.

      It seems absolutely ridiculous that the go ahead for certain treatments is only given if there just so happens to be an enhancing lesion on an MRI scan performed at an arbitrary point in time. So the decision for you to get a treatment that might actually work is contingent on you just happening to have an enhancing lesion on the day that you get your MRI scan.

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  2. I may was one that said they didn't want to know. As Anonymous 9:56:00 wrote "This is one of those horrible things that you bury your head in the sand about! What's the point of knowing whether your brain is atrophying if there's nothing you can do about it?" But I would like scientists/pharma/medic to be working on it. I had an MRI scan that data were collected if it can be used it should be. So to get brain atrophy up the agenda I better ask ask my neurologist.

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  3. Anon 9.56 here. How do we get this pushed up the agenda? Is asking our neurologists enough? (probably not?). What to do?

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    1. We are hoping to hold a meeting later this year on this topic; it would be good to include MSers.

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  4. I will look out for information about this on your blog. I understand that a reduction in brain atrophy was one of the results of the MS-Stat trial - as a participant who was on the active drug I'd love to be able to continue with it (as long as no harmful sideeffects [worse than brain atrophy!])
    Thanks for all your work in this area

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