ALS on Alejandro Caravaca Puchadeshttps://www.acpuchades.com/tags/als/Recent content in ALS on Alejandro Caravaca PuchadesHugo -- gohugo.ioen© 2026 Alejandro Caravaca PuchadesMon, 11 May 2026 00:00:00 +0000The ALSFRS-R: what it measures, why we use it, and where it failshttps://www.acpuchades.com/blog/alsfrs-critical-appraisal-part-ii/Mon, 11 May 2026 00:00:00 +0000https://www.acpuchades.com/blog/alsfrs-critical-appraisal-part-ii/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.3rd Meeting of the Spanish ALS Research Networkhttps://www.acpuchades.com/talks/3rd-meeting-spanish-als-research-network/Thu, 07 May 2026 00:00:00 +0000https://www.acpuchades.com/talks/3rd-meeting-spanish-als-research-network/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.What are we actually measuring?https://www.acpuchades.com/blog/alsfrs-critical-appraisal-part-i/Tue, 05 May 2026 00:00:00 +0000https://www.acpuchades.com/blog/alsfrs-critical-appraisal-part-i/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.ENCALS Meeting 2025https://www.acpuchades.com/talks/encals-meeting-2025/Wed, 04 Jun 2025 00:00:00 +0000https://www.acpuchades.com/talks/encals-meeting-2025/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.