A structured tour of the ALSFRS-R: its twelve items across four functional domains, why feasibility and sensitivity to change made it the field’s standard outcome measure for twenty-five years, and a frank account of the psychometric limitations that have accumulated against it.
An update on the data collected in the Spanish ALS Registry and the analyses under way, presented at the 3rd Meeting of the Spanish ALS Research Network (Zaragoza): descriptive characterisation and cohort-wide figures, cognitive assessments (ECAS), effectiveness of riluzole, real-world data on tofersen, and differences between autonomous communities.
Clinical trials in ALS live or die by their outcome measures. This opening piece of the series frames the measurement problem in neurodegeneration — biological versus functional endpoints — and sets up why the ALSFRS-R became the field’s default answer to it.
A plenary-session oral communication at the ENCALS Meeting 2025 (Turin) on the cognitive profile of restricted ALS phenotypes — progressive bulbar palsy, flail arm and flail leg syndromes — using the National ALS Register of Ireland: why these slow-progressing forms are worth studying, a data-driven way to define “restricted” disease from the clinical record, what distinguishes these patients, and ECAS analyses pointing to comparatively stable cognition over time.
