Tuesday, 4 August 2015

NEDA-5: Neurofilaments

NEDA or 'No Evidence of Disease Activity' currently uses 4 parameters that are routinely collected in contemporary clinical trials:
  • Relapse activity
  • Disability progression
  • MRI activity
  • MRI atrophy
NEDA-4

NEDA has largely come into fruition with the introduction of highly active therapies, which for the first time allow us to achieve disease remission in MS. These therapies have set the benchmark, and as they grow in number so do our treatment expectations. And here starts the evolution in our definition of MS treatment strategies.

The Holy Grail of MS treatment strategy will always be in my books the achievement of biological remission, i.e. no further loss of axons or neurones throughout an MSer's life. We have in the past repeatedly blogged on neurofilaments as measures of axonal/neuronal integrity, disability progression and neuroprotection (insert 'neurofilaments' into the search this blog to find out more). As a strategy it is the future, but, I do not intend for it to remain simply a legend in the MS literature...

Therefore after extensive discussion, 'Barts MS' have decided to offer blood and CSF neurofilaments on the National Health Service on request via your doctor.

Sometimes you have to run before you can walk and that is how you push the boundaries of science, and in this case MS.


Mount Etna (located in Sicily) is Europe's tallest active volcano (the summit, on your right ~ 3300m high). Its eruptions cause widespread destruction and death, but is also vital for the nations survival.

16 comments:

  1. Fighting talk, really great to hear of a positive action and a positive outlook

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  2. "Decided to offer blood and CSF neurofilaments on the National Health Service on request via your doctor".

    How do we do this NDG?

    ReplyDelete
    Replies
    1. So this will be set up through the Barts Health NHS Trust. Once finalised your doctor will be able to get their laboratories to send the sample to our laboratory.

      We will post the referral details on the left hand side of the blog menu once ready to go.

      Delete
  3. Wow - amazing news!
    Do you have to have both, or can you just have blood?

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  4. Share the good news Barts people with other neuros from abroad at conferences/meeting so that they can push for the same in their home countries.

    Thanx.

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    Replies
    1. It will be possible to receive samples from outside the UK using the same system mentioned above.

      Delete
    2. Great, looking forward to it!

      Since it's on NHS it should be reimobursable on other Euro national health systems - I'll ask my insurance but even if not perhaps my doc will prescribe anyway.

      Delete
  5. I really admire this work and the plan to make measuring neurofilaments available. I can see a couple off issues. Firstly, if a patient is progressive (SPMS or PPMS) I assume there is no point measuring neurofilaments as there is no treatment options. Secondly, the issue of affordability. I had Alemtuzumab 9 years ago. I have annual MRI which to date have shown new activity. If I got a neurofilament test and it showed a level which indicated on going neuronal damage, would my neuro be happy for me to have another infusion?

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    Replies
    1. Hope it was typo and scans show no new activity.

      When you get results with no neurofilaments..added piece of mind

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    2. Mouse,

      Sorry. Should have read no new activity e.g. no lesions or inflammation.

      Delete
  6. Please explain this sentence:
    Barts MS' have decided to offer blood and CSF neurofilaments on the National Health Service on request via your doctor.

    Do you mean that Barts MS is offering to analyse blood and cerebrospinal fluid (CSF) samples and thus start a database?

    ReplyDelete
    Replies
    1. I believe a service, like labs testing netralizing antibodies

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  7. Would my neuro be able to interpret the results? Will there be a guide as to how a neuro should respond to the results. I've got a wait and see neuro, so may not get put on a highly effective treatment even if the results show I'm loosing nerves.

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    Replies
    1. Will there be a guide yes I am sre it would be possible to interpret.

      Delete

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