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Study: Exploring the acceptance of an early screening tool for neurodegenerative disease that uses 3D retinal imaging and AI

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    Study: Exploring the acceptance of an early screening tool for neurodegenerative disease that uses 3D retinal imaging and AI

    Investigating the factors that may influence an individual's decision to use an early screening tool

    The early symptoms of MND are shared with many other conditions, making early diagnosis often difficult. However, early diagnosis of MND may allow treatment to begin early, slowing the progression of the disease. As the eye is essentially an outgrowth of the brain, changes in the back of the eye are associated with changes in the brain, which can be viewed via 3D scanning Optical Coherence Tomography (OCT), which is becoming increasingly available in high-street optometrists.

    Although these changes are often too subtle for the human eye to detect, recent advances in artificial intelligence (AI) and machine learning allow for the possibility of screening for neurodegenerative disease as part of a routine eye test, allowing for earlier diagnosis and subsequent treatment. However, this raises the critical question of whether the public would want to be screened for to detect the early signs of neurodegenerative disease such as Parkinson’s and MND. Therefore, this study aims to investigate the factors that may influence an individual’s decision to use such a tool, by simulating a trip to the opticians.

    The results will help to map a route for improving acceptability and uptake of such a tool, if (most likely when) it becomes available. For example, the results may advise on which groups may benefit from interventions to encourage screening uptake or raise awareness.

    What does taking part involve?

    Taking part involves completing a survey, which should take around 10-15 minutes to complete. Participants will first be asked some brief questions before starting the animated ‘role play’ of a trip to the opticians for an eye test, before being offered a new screening tool.

    Participants will receive a £5 Amazon voucher as a thank you for taking part in this study. They will be asked to enter their email address at the end to receive the voucher, which will not be linked to their previous responses.

    Who can take part?
    • People living with MND
    • Aged 18+
    • Lives in the UK and fluent English

    How can I take part?
    Take part in the study by using the link below:
    https://newcastlehealth.eu.qualtrics.com/jfe/form/SV_79Xo9BquVNIuuYS

    Expiry: November 2022
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    I read this and thought what a great idea. Then I thought hell no. My dad was sick and we knew something was wrong and it was a while before he was diagnosed (not mnd) he was told 6 months to live but he lost the will and died 1st September 1991 only 3 months later. So would I want to know and if there isn't a cure would I rather live in ignorance of the fact? Then again if I did know would I make sure I lived my life to it's best. What about insurance and all that would there be a need to declare. My husband has mnd but the dementia means he is happy singing and laughing and totally ignoring the mnd. Its just me worrying about everything. So if I received a diagnosis of something that I wasn't aware of how would I cope with that and the rest. A big can of worms! 😳
    when i can think of something profound i will update this.

    Comment


      #3
      I am likewise having contrary thoughts about this. I am troubled by this phrasing above:
      "However, early diagnosis of MND may allow treatment to begin early, slowing the progression of the disease."
      What treatment?
      Getting yourself checked for treatable conditions is very current at the moment following the death of journalist Bill Turnbull who left it too late to get his prostate cancer treated, and I fully support raising awareness of the various checks that ladies and gents can have for early detection of treatable conditions.
      However...
      With MND we are rather resigned to the idea that it is a terminal diagnosis that they can't do much about - which is why we are immediately put into the "palliative care" category.
      I support the idea of early discovery if people can be offered hope. If not, then I would prefer to live in ignorance for a while longer before someone shatters your world with a terrible diagnosis.
      Hi, I'm Eddie.
      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
      Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
      Still wondering what the future will bring.

      Comment


        #4
        Originally posted by WheelsOfSteel View Post
        I am troubled by this phrasing above:
        "However, early diagnosis of MND may allow treatment to begin early, slowing the progression of the disease."
        What treatment?
        FWIW Eddie, although the use of the word treatment is rather ambitious, early inititation of Riluzole has been shown to be beneficial, according to several studies.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment

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