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Scottish MND drug trial

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    #16
    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.

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      #17
      Disappointed that Oxford isn’t listed

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        #18
        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
        I’m going to do this even if it kills me!

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          #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

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            #20
            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

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              #21
              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?

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                #22
                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; 18 January 2020, 12:06.
                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"

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                  #23
                  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

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                    #24
                    Hi All

                    OK - thanks Kayleigh

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


                      #25
                      Tradazone Hydrochloride: https://www.medicines.org.uk/emc/product/8881/smpc

                      Memantine Hydrochloride: https://www.medicines.org.uk/emc/product/3312/smpc
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #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.

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                          #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.

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                            #28
                            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

                            Comment


                              #29
                              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 it’s 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 don’t know.

                              It could be a metabolite of Riluzole that’s 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.

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                                #30
                                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

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