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Thread: MND Register

  1. #1

    MND Register

    When I was diagnosed, I assumed that my consultant added my details to the UK MND register, especially as he is one of the project leaders.

    This may not have been the case. So two years on I've just registered.

    The register seems to be such a basic first step in gathering information about our disease that I am surprised there are so few entries - about 1000 out of a population of ca. 5000 patients

    Registration is quick and easy:

    https://mndregister.ac.uk/#

    Doug

  2. #2
    Forum Member Peckham Boy's Avatar
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    Thanks for the information you have supplied

    I have just signed up today

    PB

  3. #3
    Brilliant PB!

    Every little helps.

    Doug

  4. #4
    Forum Member Ellie's Avatar
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    It's such a shame that your MND Register is based on self-registration - it's an unrivalled opportunity to gather so much important and relevant data.

    For comparison, the Irish MND Register, rolled out in 1995, is compiled by searching Hospital Data for all major hospitals, the Death Register to capture those who died soon after diagnosis. Data providers are Consultant Neurologists, Neurophysiologists, Geriatricians & community-based Clinical Professionals - meaning it's automatic (anonymised) enrollment done by the diagnosing doctor/clinician, not by the person with the MND.

    It's managed by the National MND Clinic and overseen by the Health Regulator. It also contains a DNA bank.

    The data collected from such a long-running register is often cited in research and other papers. Our population is small, so it's a shame the UK MND Register (Scotland has its own) doesn't capture the whole MND population as it would have a much larger data capture.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Thanks Ellie.

    You're right! Your system sounds so much better and comprehensive.

    I was very surprised registration wasn't automatic in England.

    Apparently the register is funded by the MNDA. I feel they should publicise it more.

    I'll ask Mrs May to include it in the backstop!

    Doug

  6. #6
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    Good Luck with that one, Doug ! ��

    I have just registered but like you I assumed it would be automatic, so thanks for sharing the information.

    Love Debbie x

  7. #7
    Forum Member Kayleigh's Avatar
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    Thanks for your post about the MND Register Doug.

    Perhaps there is already some collation of data about MND patients (whether they opt into the Register or not) - otherwise how could the current sum total of approx. 5000 MND patients be arrived at?
    Last edited by Kayleigh; 2nd April 2019 at 16:57.

  8. #8
    Forum Member Ellie's Avatar
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    Hi Kayleigh,

    The prevalence of MND in the UK is known to be just over 7 people per 100,000, so that's where the approx 5,000 number of people living with an MND comes from.

    Prevalence is the actual number of cases of people alive with the disease during a period of tie, e.g. now.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Forum Member Barry52's Avatar
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    Like Doug I had assumed the data would have been recorded by the clinic where you are diagnosed but I found out that this was not the case. I have been encouraging our friends attending Nottinghamshire and Lincolnshire groups to register their details but we must remember that not everyone has access to the internet.

    Barry
    Iím going to do this even if it kills me!

  10. #10
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    Now registered. A bit disconcerting that the drop down still listed Hope Hospital but not Salford Royal

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