Characteristics of cohort
| Median | Range | |
| Age at diagnosis (months) | 6.5 | 3.5–21 |
| Age of first dose nusinersen (months) | 8.1 | 0–85.7 |
| Age at initiation of Long Term Ventilation (months) | 8.1 | 2.3–36.5 |
| Age at initiation of advanced care pathway (n=4) (months) | 21.3 | 7.1–70.8 |
| Number of admissions per child* | 11 | 1–25 |
| Number of emergency admissions per child* | 3 | 0–21 |
| Number of elective admissions per child* | 4 | 0–9 |
| Hospital days per child* | 84 | 7–235 |
| General paediatric hospital days per child* | 0 | 0–63 |
| HDU days per child* | 79 | 7–173 |
| PICU days per child* | 13 | 0–109 |
*Over 24 months.