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Research study: Measuring Cognitive and Behavioural Change in MND

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    Research study: Measuring Cognitive and Behavioural Change in MND

    A study being conducted at King’s College London is remotely recruiting people to test whether different screening tools lead to similar rates of diagnosed changes in thinking, language and behaviour in MND.

    About 50% of people with MND develop changes in their thinking and behaviour which may, in around 15% of cases, lead to the diagnosis of frontotemporal dementia (FTD). Several different assessment methods - called screening tools – exist for testing people with MND and obtaining information from carers. However, it is unclear whether each of the different tools would lead to the same conclusion in the same person with MND, since they use different approaches and rules for deciding whether someone is impaired. If they do not agree, some people could receive an incorrect diagnosis of changes in their thinking, language and behaviour, depending on which tool was used; this might affect the practical care they receive.

    Who is invited to take part?
    • People with MND
    • Healthy controls – Carers can take part as healthy controls also.
    • All participants must be between the ages of 18 and 75; native language is English; living in the UK; not receiving treatment for any other life limiting illness (e.g. cancer) or neurological disease (e.g. Alzheimer’s Disease, Parkinson’s Disease) or neurological disorder (e.g. stroke).
    What would I need to do?
    Complete a series of computerised questionnaires and puzzle-like tests. The tasks will take about 2 hours in total and can be divided into shorter sessions. You will be given generous breaks between tasks.
    Taking part in this research will not involve any in-person interaction, all activities will take place remotely online through video call apps so you can take part from home.

    Where do I find more information?
    For more information about the study and to sign up your interest, please visit our website, or email the researcher, Lyndsay Didcote at [email protected].
    Our working hours are Monday to Friday 8:30am until 5pm

    I just applied 😊
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Good on you.
      when i can think of something profound i will update this.


        I had to be reminded when I applied that I had been involved with this one before!


        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

        "Things turn out the best for people who make the best of the way things turn out"


          We are still recruiting people with MND and healthy controls. You can sign up to hear more here: or email me at [email protected].

          240593 Poster - patients-healthy controls v2.0-1.jpg

          Lyndsay Didcote - PhD Student
          Institute of Psychiatry, Psychology and Neuroscience
          King's College London