Page 2 of 5 FirstFirst 1234 ... LastLast
Results 11 to 20 of 44

Thread: Scottish MND drug trial

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,635
    It was great to see MND being the headline item on the BBC's 6pm News.

    I think its focus on following the trial over the next few years is particularly beneficial and will keep MND in the news.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    Forum Member
    Join Date
    Nov 2019
    Posts
    2
    Hi I have also registered and had the same reply you are mentioning. I am concerned that the trial won't be available to MND patients in England - Wales - Northern Ireland because of money. Scotland MND are announcing £1.5 million for this trial and hopefully the money won't run out for all other UK patients. Mr Suvankar Pal also said these trials are for hundreds of people with MND, This raised a concern to me as the BBC announced that 5000 people in the UK have MND!!!!. I am really enthusiastic about it and glad that some MND patients are going to do the trial, but wish I lived in Scotland where my grandad came from and his name was Ronald Macdonald!!! but he didn't have red curly hair ha ha

    Nickyp X

  3. #13
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    1,027
    Don't worry Nicky. The trial is definitely coming to England soon. My MND Centre, Salford is one of the centres that is doing it. I only found this out today as I was in email contact with Salford's Specialist Nurse. The organisation running the trial are in regular contact with her and my neurologist. You could speak with somebody at your centre to see if they or a nearby centre are taking part.
    Lynne
    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. #14
    Forum Member
    Join Date
    Nov 2019
    Posts
    2
    Thanks Lynne for your reply and have contacted my Centre today.

  5. #15
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,635
    Apart from Edinburgh, trial centres are:


    • Aberdeen
    • Birmingham
    • Cambridge
    • Dundee
    • Glasgow
    • Inverness
    • Irvine
    • London
    • Newcastle
    • Salford
    • Southampton

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #16
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,635
    Welcome to the Forum, Nicky.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
    Forum Member
    Join Date
    Jan 2011
    Location
    Northamptonshire
    Posts
    1,107
    Disappointed that Oxford isnít listed

  8. #18
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,414
    Quote Originally Posted by miranda View Post
    Disappointed that Oxford isn’t listed
    Similarly that Sheffield, another centre of excellence is excluded. I understand that people like me with slow progression are difficult to measure in drug trials but I hope that if they find a treatment it will be available to all.

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

  9. #19
    This of course is great publicity.

    Is it going to lead to breakthroughs? Time will tell.

    Does anyone know the precise drugs (an alzheimers one and an anxiety one) being proposed. I have asked MND Scotland and they have not answered. I can guess the alzheimers one, but we need to know.

    In the 21st century communications world we sufferers need to see the pre-clinical evidence of any drugs proposed.

    There may be IP (confidentiality) issues I acknowledge.

    I am interested in the trial, but I will take a very analytical view of participating. It’s a balance of risk/benefit/providing for the greater good in the long term and future generations of sufferers.

    As a slow Progressor it would be prudent to assess the pre-clinical and side effects of an already approved drug before taking part.

    Lee

  10. #20
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    1,341
    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

Posting Permissions

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