December 17, 2025

@michaelokun

Can we predict the disease trajectory of ALS? This new paper provides insights on ALS related functional declines. Survival analysis is a statistical approach that estimates how long it will take before an event occurs in a disease or condition. Lillelund and colleagues describe in a new paper in PLoS One how multi-event survival analysis could be used to forecast meaningful functional decline for folks living w/ ALS. Key Points: - Multi-event modeling predicted 5 key functions including speaking, swallowing, handwriting, walking, and breathing and did so w/ individualized survival curves. - Covariate based models outperformed population estimates and offered a far better timing prediction for when functional loss was likely to occur. - Counterfactual scenarios revealed important insights showing, for example, that bulbar onset accelerates speech and swallowing decline and that Riluzole would have a minimal effect on the disease course. My take: Predicting the trajectory of a disease like ALS could be critically meaningful for folks w/ disease and also for families. Here are 5 points that resonated w/ me about this article: 1- Understanding functional timelines matters because it helps tailor interventions at the right moment w/ the right tools. 2- ALS declines differently in each person and personalized predictions offer more control and clarity for folks and for families. 3- Speech and swallowing losses may come earlier, especially in bulbar onset ALS and that knowledge could empower planning. 4- Better predictive tools reshape care and aid health care providers in organizing earlier respiratory nutritional and mobility support. 5- This type of modeling signals a step forward for bringing ALS care closer to truly personalized pathways that can be adapted to each individual’s disease course. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0336476 #michaelokun #ALS #parkinson #fixelinstitute