February 24, 2020 at 4:03 pm #14601Dagmar MunnKeymaster
The ALSFRS-R has been used in ALS Clinics and clinical trials since the 1990s, and is the standard used to determine the rate of progression of ALS symptoms. Although it is quick and easy to use, this scale has its share of criticism. For example, answers are subjective and the tracking of symptom changes is generalized and not specific enough to track subtle changes.
In this webinar, Christina Fournier, MD, MSc, Emory ALS Center and Emory University, who helped develop a new scale called, ROADS (Rasch-Built Overall ALS Disability Scale), presents how the ROADS was developed and shares their goal of using it in all future ALS clinical trials.
As someone who for years has been disappointed in the ALSFRS-R, I welcome a new scale such as the ROADS. I recommend this webinar (45 -min.)to pALS and cALS. It will be worth your time to better understand this new scale and how it will improve tracking symptom changes – – both in the clinic and in trials.
- WEBINAR: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/roads-to-a-better-als-outcome-measure-the-new-rasch-built-overall-als-disab
- To see a copy of the ALSFRS-R: https://www.outcomes-umassmed.org/ALS/alsscale.aspx
- To see copy of the ROADS: https://med.emory.edu/departments/neurology/programs_centers/emory_als_center/_documents/roads.pdf
Was this webinar helpful for you? What are your thoughts about ALSFRS-R vs. ROADS?
February 25, 2020 at 4:33 pm #14625BillParticipant
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.
February 27, 2020 at 12:09 pm #14646Dagmar MunnKeymaster
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.
February 29, 2020 at 7:42 am #14657John RussellParticipant
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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