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MND Neck Collar Survey

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    MND Neck Collar Survey

    Developing a bespoke neck collar for people living with MND

    Muscle weakness is one of the key features of MND and head drop can result from weakness in the neck, shoulder girdle and long back extensor muscles. This can result in the use of head supports, such as neck collars, to help support the person living with MND. The aim of this study is to develop a bespoke neck collar with embedded sensors for patients with motor neurone disease, using 3D scanning and 3D printing. As part of this project, the research team hope’s to better understand how people living with MND experience using neck collars.

    What does taking part involve?

    Participants will be asked to fill out a survey on experiences with neck collars and their view on key features of collars (what’s good currently, missing). The survey should only take 5 minutes, and responses are completely anonymous.

    Who can take part?
    • People living with MND: individuals with a confirmed diagnosis of MND
    • Aged 18 – 85 years
    • Suffering from neck weakness due to MND
    • Use of a collar to treat neck weakness

    All participants must have access to the internet and able to complete online forms and questionnaires (or have someone who is able to support them to complete this). Participants can be UK-wide (remote).

    How can I take part?

    To take part, please click here, the page will then ask for a code. Please use the code:
    Survey code: ‘43 67 74’

    To find out more please click here. For any queries and more information, please email the study researcher, Sam Spears at [email protected]
    Our working hours are Monday to Friday 8:30am until 5pm

    Survey completed
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      As an FYI to any non-UK residents: although the info on the MNDA site (naturally) says that the survey is available "UK wide", I checked with Sam who said he welcomes all participants, wherever they live. 👍👍
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


        Such a shame my mother would have sooooo needed that! She tipped her head keft and write, sorry, left aand right, to operate a manual possum machine. 3 hours to type, "Uncomfortable, please move me" which i would find waiting for me when i came home for lunch from my local work.

        Sometimes, technology is wonderful
        Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.