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Table 2 Participant characteristics by subgroup

From: Priorities when deciding on participation in early-phase gene therapy trials for Duchenne muscular dystrophy: a best–worst scaling experiment in caregivers and adult patients

Variable Adults with Duchenne Caregivers Total
n % n % n %
Mobility
 Uses wheelchair most or all the time 27 100.0 91 36.8 118 43.1
 Walks with assistance or better 156 63.2 156 56.9
Sex
 Male 27 100.0 53 21.5 80 29.2
 Female 194 78.5 194 70.8
Race/ethnicity
 White, non-Hispanic 17 63.0 193 78.1 210 76.6
 Black, non-Hispanic 0 0.0 4 1.6 4 1.5
 Hispanic, all-races 5 18.5 20 8.1 25 9.1
 Other, non-Hispanic 3 11.1 27 10.9 30 11.0
 Refused 2 7.4 3 1.2 5 1.8
Marital status
 Married or committed relationship 1 3.7 211 85.4 212 77.4
 Single 24 88.9 8 3.2 32 11.7
 Divorced or separated 0 0.0 27 10.9 27 9.9
 Widowed 0 0.0 1 0.4 1 0.4
 Refused 2 7.4 0 0.0 2 0.7
Educational attainment
 High school or less 14 51.9 49 19.8 63 23.0
 Technical school or associate degree 3 11.1 34 13.8 37 13.5
 Bachelor’s degree 3 11.1 94 38.1 97 35.4
 Graduate or professional degree 5 18.5 69 27.9 74 27.0
 Refused 2 7.4 1 0.4 3 1.1
Annual household income
 Less than $50,000 8 29.6 12 4.9 20 7.3
 $24,000 – $50,000 1 3.7 22 8.9 23 8.4
 $51,000 – $75,000 1 3.7 30 12.2 31 11.3
 $75,001 – $100,000 1 3.7 45 18.2 46 16.8
 More than $100,000 3 11.1 110 44.5 113 41.2
 Prefer not to answer or refused 13 48.2 28 11.3 41 15.0
Previous clinical trial participation
 Yes 5 18.5 128 51.8 133 48.5
 No 22 81.5 119 48.2 141 51.5
  1. N = 274. Percentages may not add up to 100% due to rounding