study report from The Netherlands re: Europe's ALS . . . 'for doctors only?'
 

Prognosis for patients with amyotrophic lateral sclerosis: development and validation of a personalized prediction model.

Prognosis for patients with amyotrophic lateral sclerosis: development and validation of a personalised prediction model. - PubMed - NCBI

If I understand their report accurately, medical doctors can obtain an account on their web site to access their database with n=11,475 patient but they do not wish to allow patients to do so BECAUSE their intent is predict survival and they do not want to cause a patient to believe they have far less time to live than they might otherwise expect; the report does not give way to calculate one patient's life expectancy, instead "prediction of survival in individual patients remains elusive." Their Table 1 chart has fourteen large cohorts, although a few are not so large. Median survival apparently rarely above thirty-six months for any cohort like below thirty-six months overall cohorts. The reports is unusual because n= quite a large number for many of the cohorts. Frankly, more readable than most reports.