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. 2021 May 20;16:231. doi: 10.1186/s13023-021-01852-y

Table 1.

Demographics

% (n) Mean age+/SD (years) Median age (minmax) (years)
Consented Registry 100% (47) 15.96+/9.5 14 (341)
Survey 81% (38) 16.03+/10.1 14 (341)
Completed 51% (24) 19.7+/9.8 18.5 (341)
Partially 13% (6) 14.3+/9.9 12 (528)
Not completed 17% (8) 6.3+/3.8 5 (314)
Sex Female 47% (22) 16.1+/10.0 13.5 (337)
Male 53% (25) 15.8+/9.1 14 (341)
Status
Living Current age 72% (34) 14.1+/8.9 13 (337)
Deceased At age 28% (13) 20.8+/9.6 22 (741)
Race n
White 35
Asian 5
Black 2
Hispanic 2
Aboriginal 1
Native Hawaiian 1
Unknown 1
Country
USA 32
UK 5
Australia 2
Canada 2
Ireland 2
Netherlands 2
Guatemala 1
New Zealand 1