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Time from diagnosis to death causing problems with clinical trials

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    #16
    I missed the webinar. I'd planned to log in but we were out. 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.

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      #17
      It is still available to watch ( 91 mins ) at https://www.als.net/als-webinars/archive/05142019/

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        #18
        Hi Lynne,

        It's now available to watch, I posted the link for you on the webinair thread https://www.als.net/als-webinars/

        You need to register to watch it.

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

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          #19
          ALSFRS-R limitations

          Hi Dis1960

          Yes, you’re right. The ALSFRS-R is a rather crude metric. A bit like using the FTSE-100 as a measure of the health of the whole economy.

          Monitoring ones own ALSRFS-R, i.e. normalising out the subjective bias, can be useful. But comparing scores between patients is fraught with difficulty.

          If you key your symptoms into one of the oldest (1996-2007) and biggest (>6000 patients) ALSFRS databases – the University of Massachusetts CARE program – you’ll see on the plot at the end the huge spread of scores across the population.

          https://www.outcomes-umassmed.org/als/alsscale.aspx

          Bear in mind too that not all ALSFRS-R points are equal! A one-point change in my score may not mean the same as a one-point change in your score, depending where we are on the scale.

          Getting rid of subjective bias when trying to quantify something that is essentially qualitative is notoriously difficult. The ALSFRS-R is a quick and crude statistic, but clinicians like it. You just have to be aware of its limitations and interpret the numbers with care.

          Doug

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            #20
            Thanks Ellie. It was great. Lots of info and well explained. Lynne
            Last edited by Lynne K; 20 May 2019, 13:47.
            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

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