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    Mnd-smart

    A little while ago I registered interest in MND-SMART, without any great expectation of being able to take part.

    I’ve just received from them the email below, which gives a useful update of how the trial is moving forward.

    Doug
    ---------------------

    Good afternoon

    Thank you again for registering your interest in taking part in the MND-SMART. We’re very grateful that you are considering taking part in the trial and we have your details saved on our secure database.

    Edinburgh trial centre now open
    We’re pleased to announce that this week we opened our first trial centre in Edinburgh at the Anne Rowling Regenerative Neurology Clinic and to have started to see trial participants.

    UK trial centres
    We are currently only allocating appointments in Edinburgh to people who live in Edinburgh and the surrounding areas. We are working hard with research teams across the UK to open the other 11 trial centres as soon as possible.

    As a reminder, the other trial sites we will be opening are in Aberdeen, Birmingham, Cambridge, Dundee, East London, Glasgow, Inverness, Irvine, Newcastle, Salford and Southampton. We are also working with new trial centres and will be able to announce their locations soon.

    We’ll be in touch
    When a trial centre near you opens we will pass on your contact details to them. You will then be contacted by the local trial team to see if you are still interested in taking part in MND-SMART. The team will also provide you with additional information on the trial at their centre.

    Keep up-to-date
    When new trial centres open we will announce these on www.MND-SMART.org, and on the Euan MacDonald Centre twitter and Facebook accounts.

    You can get in touch with the MND-SMART trial head office in Edinburgh by emailing [email protected] or phoning 0131 242 7985 or 07341 887 737.

    You can also keep up-to-date with the latest news on the trial by signing up to our newsletter by using this link: www.mnd-smart.org/news/newsletters

    Thank you again for supporting research into treatments for MND.


    MND-SMART Trial Management team

    #2
    I saw on the BBC News at 6pm that the lady they are following, Ruth Williamson, started the MND-Smart trial this week in Edinburgh.

    Hopefully the "as soon as possible" to get the trial up and running in other centres is not that long away for you, Doug.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      I had an email this last week updating me to say there were some centres around England that they weren't recruiting yet
      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


        #4
        I too had an email Doug to update me that the MND Smart Trial has started in Edinburgh and they listed all of the English sites that will be taking part soon. It also stated that they’re looking for more sites to take 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


          #5
          MND-SMART update - coronovirus effect

          I've just received the following email from the MND-SMART management team:

          In response to the rapidly evolving circumstances surrounding Coronavirus (COVID-19) we have, in accordance with guidance from our research sponsors (University of Edinburgh and NHS Lothian), taken the difficult decision to pause recruitment to MND-SMART. We will also be delaying the opening of new trial centres across the UK.

          We appreciate that this will be disappointing for some people but is necessary to protect the health of people with MND, their families and the wider community. This decision also ensures that all medical and nursing staff involved in the trial are available to be redeployed to cover essential clinical Coronavirus (COVID-19) activities.

          We will continue to monitor the situation and strive to restart trial recruitment, and open other trial centres, as soon as it is possible and safe to do so. We will keep you informed through regular updates by email and on the trial website (www.mnd-smart.org).

          Thank you again for registering your interest in MND-SMART.
          ------
          PLEASE stay safe everyone!

          Doug

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