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    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
    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. One sided 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"

    Comment


      #3
      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.

      Comment


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

        Comment


          #5
          Hi Lynne

          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. One sided 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"

          Comment


            #6
            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
            I’m going to do this even if it kills me!

            Comment


              #7
              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

              Comment


                #8
                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

                Comment


                  #9
                  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

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                    #10
                    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

                    Comment


                      #11
                      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.

                      Comment


                        #12
                        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

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                          #13
                          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.

                          Comment


                            #14
                            Thanks Lynne for your reply and have contacted my Centre today.

                            Comment


                              #15
                              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.

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