A statistical model using data from a population registry may aid the estimation of survival in individual patients

Amyotrophic lateral sclerosis (ALS) is a clinical syndrome with complex upstream biological determinants, so considerable clinical variation in the natural history of ALS between patients is to be expected. When first told that the average survival is about 2 years from diagnosis or 3 years from symptom onset, the combination of the psychological trauma of the moment and a lack of appreciation of statistics leaves many people with the feeling that they have personally been ‘given’ a specific timescale of 2 years of remaining life. As Knibb et al, in their JNNP publication, correctly point out,1 “…not every patient wants detailed information; nonetheless, for many patients diagnosed with a life-limiting illness, such an estimate is important for providing hope and enabling them to plan their life and its ending”. An open, honest and sensitively presented explanation of the facts of ALS, …