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Can we reduce trial burden and improve remote clinical monitoring for people living with amyotrophic lateral sclerosis with an imperfect tool?
In this issue, Bakker and colleagues report on the development and assessment of the performance of a self-administered version of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R).1
The ALSFRS, subsequently revised to ALSFRS-R is a functional outcome measure for ALS trials and has been shown to correlate with survival and muscle strength.2 As an outcome measure, it is not without its problems including multidimensionality, non-linearity, poor sensitivity to change in latter stages of disease and the absence of a cognitive function domain.3 4
Survival has traditionally been seen as the gold standard outcome measure; however, such trials are long and expensive. This has led to …
Contributors CJM wrote the article following an invitation to do so by the editor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests CJM has performed consultancy work for Orion pharma and Orphazyme.
Patient consent for publication Not required.
Provenance and peer review Commissioned; internally peer reviewed.
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