PRECISION-ALS

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 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.