Table 2

Demographic data of the included patients with ALS in substudy 2

Characterisation of the ALS group (n: 96)n%
Inclusion site
 Glostrup Hospital99
 Bispebjerg Hospital3334
 Roskilde Hospital3334
 Odense Hospital1617
 Aarhus Hospital55
Age (median age: 67)
Age when first symptoms occurred (median age: 65)
ALS subtype I
 Familial ALS22
 Sporadic ALS9498
ALS subtype II
 Spinal ALS6063
 Bulbar ALS2829
 Both spinal and bulbar ALS66
 Truncal ALS22
ALSFRS-R score on date collection day (median score: 37):
 Mild ALS symptoms (ALSFRS-R score >36)4951
 Moderate ALS symptoms (24< ALSFRS R score ≤36)3334
 Severe ALS symptoms (ALSFRS-R score ≤24)1415
Progression rate estimation (Δtime*ALSFRS-R score on data collection day)
 Slow progression rate2627
 Medium progression rate3739
 Aggressive progressive rate3334
Overall survival time from onset of symptoms (Database update: 2 May 2020)
 Still alive (missing data)3941
 Short survival time (0–2 years)2223
 Medium survival time (2–4 years)2526
 Long survival time (4+ years)1010
Cognitive impairments observed
Riluzole treatment on data collection day
  • ALS, Amyotrophic lateral sclerosis; ALSFRS-R, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised.