Page 3 of 5 FirstFirst 12345 LastLast
Results 21 to 30 of 44

Thread: Scottish MND drug trial

  1. #21
    Forum Member
    Join Date
    Jul 2016
    Posts
    27
    I am also disappointed that Sheffield is not involved... I wonder why? I read somewhere that they are only looking for a group of 750 participants across Scotland and England. I wonder if a lack of funding is the reason for this?

  2. #22
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    487
    Good afternoon

    I said partly in jest elsewhere that I wonder if this is a feature of the wish for Scottish independence!

    Gemma are you sure Sheffield is not involved?

    The MDN coordinator at Kings suggests they are waiting to see how any people come forward in Scotland before they come down to England
    Last edited by nunhead_man; 18th January 2020 at 12:06.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  3. #23
    Quote Originally Posted by Kayleigh View Post
    Hello Lee,

    The names of the drugs are listed on the EU clinical trials register:-

    http://https://www.clinicaltrialsregister.eu/ctr-search/trial/2019-000099-41/GB

    Best wishes,
    Kayleigh
    Good spot! Thanks

  4. #24
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    487
    Hi All

    OK - thanks Kayleigh

    Next question do we have any ideas what these things do?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  5. #25
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,642
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #26
    The idea of repurposing drugs is not new. This new trial platform is of course interesting.

    There is potentially a lot to be said but I am letting the dust settle a bit.

    With the almost zero exclusion criteria it will be fascinating what the response is.

    There will be many reactions to any detail emerging. One will be people just getting hold of the drugs and trying outside of trial. Especially in the case of Trazadone which is an anxiety drug.

    Who knows why they have been chosen. A combination of historical trial data and perhaps new pre-clinical evidence.

    I for one will be assessing before jumping. Risk/benefit is still a major consideration.

    We are starting to see an explosion of new potential treatments in various trial stages.

    But the fact this made major news is brilliant.

  7. #27
    Gemma. They need a large number like 750 because of statistical significance and proposed use of trial platform. 750 is a lot. There are only 300 to 400 in Scotland alive! I would assume max 50% signup. They need to spread to uk to get.

  8. #28
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    1,341
    Quote Originally Posted by Onein300 View Post
    The idea of repurposing drugs is not new. This new trial platform is of course interesting.

    There will be many reactions to any detail emerging. One will be people just getting hold of the drugs and trying outside of trial. Especially in the case of Trazadone which is an anxiety drug.

    Who knows why they have been chosen. A combination of historical trial data and perhaps new pre-clinical evidence.
    I find it interesting that part of the reason why the drug currently approved to treat Alzheimers has been chosen for this trial is that "it works by reducing the action of a brain chemical called glutamate" -
    as detailed under the heading 'what drugs will you be testing first?':-

    http://https://www.mnd-smart.org/about/participant-faqs

    My understanding is that Riluzole is also thought to surpress the action of glutamate - and so, perhaps, there will be a difference in results between people who take Riluzole and the Alzheimers drug compared to those in the trial who only take the Alzheimers drug?

    Best wishes
    Kayleigh

  9. #29
    Quote Originally Posted by Kayleigh View Post
    I find it interesting that part of the reason why the drug currently approved to treat Alzheimers has been chosen for this trial is that "it works by reducing the action of a brain chemical called glutamate" -
    as detailed under the heading 'what drugs will you be testing first?':-

    http://https://www.mnd-smart.org/about/participant-faqs

    My understanding is that Riluzole is also thought to surpress the action of glutamate - and so, perhaps, there will be a difference in results between people who take Riluzole and the Alzheimers drug compared to those in the trial who only take the Alzheimers drug?

    Best wishes
    Kayleigh

    We know Riluzole works, and itís the only drug proven over a long time. Edaravone/Radicava is NOT yet.

    We also know Riluzole has more effect than previously thought, some 10% extra life now being the accepted stat rather than 2 to 3 months. That data was only in the 18 month study. However, it probably works in some more than others, but crucially although thought it was glutamate reduction we just donít know.

    It could be a metabolite of Riluzole thatís doing the job rather than the drug itself. Loads of other glutamate reduction drugs were tested, including memantine (over 10 years ago) - with no success.

    Bringing the two together might help, but it might do the opposite! Unless of course there is new pre-clinical evidence to say otherwise?

    I am trying to establish whether any new pre-clinical has been carried out.

  10. #30
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    1,341
    Good afternoon Lee,
    Thank you for kindly responding to my post and for providing such a detailed explanation.

    Very best wishes to you and your family,
    Kayleigh

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •