Participation in the ENCALS Meeting 2026 (Madrid) spanning an oral communication, three posters and a moderated session: a talk on moving from ALS registries to data-driven “digital phenotypes”; posters on the multidimensional structure of ALSFRS-R decline and what the total score costs trials, on residential air pollution (PM₁₀) as a modifier of functional progression, and on the dissociation between functional decline and quality of life; plus moderating the Epidemiology & Phenotyping session.
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.
Participation in the ENCALS Meeting 2025 (Turin) spanning an oral communication and three posters: a plenary talk on the cognitive profile of restricted ALS phenotypes — progressive bulbar palsy, flail arm and flail leg — using the National ALS Register of Ireland; and posters on whether hormonal exposure delays age at onset in women with ALS, on what actually shapes self-perceived quality of life in the PRECISION ALS cohort, and on an independent validation of the PLSFRS for primary lateral sclerosis, including administration over the phone.
A poster at the ENCALS Meeting 2024 (Stockholm) putting the Rasch-built Overall ALS Disability Scale (ROADS) and the self-evaluated ALSFRS-R side by side in real-world telemedicine data from the LinkELA app: how closely the two scales agree, how that agreement holds across King’s and MiToS stages, and the first hint that ROADS registers change the ALSFRS-R misses.
A platform communication in Basel, co-presented with Harry McDonough, mapping the natural history of ALS through a time-to-event analysis of clinical milestones in 21,547 patients across the pan-European PRECISION-ALS cohort — including marked differences between care centres in when gastrostomy and non-invasive ventilation are started — plus a poster on LinkELA, the telemedicine app we use to follow our ALS patients from home in Barcelona.
