Fig. 1

Time to death or permanent ventilation*: ANCHOVY. *Permanent ventilation was defined as ≥ 16 h of non-invasive ventilation per day for > 21 consecutive days, intubation for > 21 consecutive days, or tracheostomy. 90% CIs are calculated with a complementary log–log transformation for the estimated survival function, with standard errors computed via Greenwood’s formula. Patients with no recorded event are censored at the last age they were known to be event free. Two additional patients died after 24 months of age. CI, confidence interval