Skip to main content

Table 1 Demographics of Affected Individual within Final Dataset for 2019 Community Survey Quality of Life Analysis

From: Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey

  Total Type I Type II Type III
n (%) 478 121 (25.3) 225 (47.1) 132 (27.6)
Male, n (%) 194 (40.6) 54 (44.6) 86 (38.2) 54 (40.9)
Age at symptom onset in months, mean (SD) 15.1 (31.3) 2.6 (2.4) 10.7 (5.8) 33.9 (54.1)
Diagnostic delay in monthsa, mean (SD) 26.9 (67.9) 2.1 (2.3) 11.9 (30.3) 74.4 (108.5)
Age at diagnosis in months, mean (SD) 43.1 (83.2) 4.0 (4.4) 24.6 (39.5) 110.4 (126.2)
Age at time of survey in years, mean (SD) 17.1 (16.8) 4.1 (5.9) 17.2 (14.3) 28.6 (18.8)
  1. Data represents unique individuals-only
  2. SD standard deviation
  3. aDiagnostic delay calculated for each individual by age at diagnosis (in months) minus age at symptom onset (in months)