Page 1 of 5 123 ... LastLast
Results 1 to 10 of 44

Thread: Scottish MND drug trial

  1. #1

    Scottish MND drug trial

    It was good to see this new research trial into re-purposing drugs get the headline spot in the BBC 6 o'clock news this evening.

    Doug

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

    Yes indeed

    https://www.mndscotland.org.uk/lates...rial-launched/

    Assume some of Dodi's money is going to this?
    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. #3
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    1,029
    I registered for this Scottish trial because I haven't heard from my consultant about the trial that she'd agreed to put me forward for. They are planning to trial multiple drugs that have been prescribed for other conditions. They're aim is to slow, halt or fix (my words) damage done by MND
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
    Douglas has registered but we have to wait until they can extend the research to sites in England

  5. #5
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    487
    Hi Lynne

    Quote Originally Posted by Lynne K View Post
    They're aim is to slow, halt or fix (my words) damage done by MND
    Let's hope they can repeat the success achieved by Viagra!

    In case you don't know this was a drug that was repurposed from proposed heart condition use to create heart stopping conditions in others!
    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"

  6. #6
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,415
    Here is the link for registration. I hope that the uptake is high as they need several hundred participants to measure results.

    https://www.mnd-smart.org/about/participant-information

    Barry
    Iím going to do this even if it kills me!

  7. #7
    Forum Member
    Join Date
    Sep 2018
    Posts
    102
    I find this quite confusing as I had a 3 monthly checkup at UCL last Thursday and as usual I asked him if there was any upcoming trials etc. He informed me that a drug in the US looked promising but it was years off.
    Imagine my surprise when 5 days later they are appealing for participants for a comprehensive new drug trial. I’m separated from my wife and family in order to be at the sharp end of any new science that might come up.
    Not sure what to think.
    Jerry xxx

  8. #8
    Forum Member
    Join Date
    May 2018
    Posts
    469
    Thanks for the link Barry,

    It was good to see MND as the headline report on the BBC , promoting awareness. I registered for the trial, although it is initially only available to people in Scotland. I received an email to say they hope to extend it in the coming months.

    Love Debbie x

  9. #9
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    1,341
    Hi Jerry,

    I would have thought neurologists at UCL would have been given advance notification about the launch of such a significant trial but perhaps your neurologist only found out about it when it was announced in the news??

    The MNDA provide a list and information about trials on the following webpage:-
    http://https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/


    Very best wishes,
    Kayleigh x

  10. #10
    Forum Member
    Join Date
    Sep 2018
    Posts
    102
    Hi Kayleigh, yes maybe. I’ve used the link which Barry very kindly put up so will see what happens.
    Hope you’re well xxx

Posting Permissions

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