ALS News Today Forums Forums ALS Progress Research Topics ROADS vs ALSFRS-R: Do you know about this new ALS rating scale?

  • Bill

    February 25, 2020 at 4:33 pm

    First time I saw this and at first blush I don’t think it is an improvement. Problem I saw is interpretation of “with difficulty “ same subjectivity as ALSFRS. A little difficulty? Major difficulty? Big difference between those answers. There is also age that affects some things with or with ALS. With my age (70) , I find it harder to get up from floor as example. Is it my age, general fitness, arthritis or ALS. Subjective.
    My biggest concern is the not the scale but lack of central collection and analysis of progression. I think that lack of collection is a mindset that since there is no cure what is to be gained. I sure would like to  see relative progression of pALS with and without Radicava or Riluzole for example to help with serious decisions.

  • Dagmar

    February 27, 2020 at 12:09 pm

    I agree Bill! There are days when I think: is it “me” just having an off-day, or is it age… or is it ALS???

    Hard to tell.

  • John Russell

    February 29, 2020 at 7:42 am

    I went through the ROADS scale and felt it paints a much better picture of me, especially the last questions. I had no trouble deciding on 2 for questions regarding stairs & getting off the floor. I’m 75 but I have no trouble blaiming these deficiencies on ALS since they occurred rapidly. In some ways ALS is like old age occurring at warp speed.

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