Table 1 Participant characteristics of the multinational survey cohort (n = 496).
From: A multinational survey of potential participant perspectives on ocular gene therapy
Participant type | |||
|---|---|---|---|
Adult with IRD | Parent/guardian/carer | Total | |
n = 439 (88.5%) | n = 57 (11.5%) | n = 496 (100.0%) | |
Age (years) | 55.6 (14.4) | 45.3 (11.0) | 54.5 (14.5) |
Gender | |||
Male | 219 (49.9%) | 18 (31.6%) | 237 (47.8%) |
Female | 216 (49.2%) | 39 (68.4%) | 255 (51.4%) |
Non-binary | 2 (0.5%) | 0 (0.0%) | 2 (0.4%) |
I prefer not to say | 2 (0.5%) | 0 (0.0%) | 2 (0.4%) |
Age of first symptoms (years) | 24 [12, 40] | 5 [1, 12] | 20 [10, 38] |
Primary language | |||
English | 393 (89.5%) | 37 (64.9%) | 430 (86.7%) |
Other than English | 46 (10.5%) | 20 (35.1%) | 66 (13.3%) |
Country of residence | |||
USA | 316 (72.0%) | 32 (56.1%) | 348 (70.2%) |
UK | 50 (11.4%) | 5 (8.8%) | 55 (11.1%) |
Other | 73 (16.6%) | 20 (35.1%) | 93 (18.8%) |
Ethnicity | |||
White | 379 (86.3%) | 50 (87.7%) | 429 (86.5%) |
Hispanic or Latino | 19 (4.3%) | 4 (7.0%) | 23 (4.6%) |
Asian | 22 (5.0%) | 2 (3.5%) | 24 (4.8%) |
Black or African American | 10 (2.3%) | 1 (1.8%) | 11 (2.2%) |
American Indian or Alaskan Native | 4 (0.9%) | 0 (0.0%) | 4 (0.8%) |
I don’t know/Prefer not to say | 5 (1.1%) | 0 (0.0%) | 5 (1.0%) |
IRD diagnosis | |||
Retinitis Pigmentosa | 272 (62.0%) | 20 (35.1%) | 292 (58.9%) |
Choroideremia | 14 (3.2%) | 2 (3.5%) | 16 (3.2%) |
Cone-rod Dystrophy | 21 (4.8%) | 4 (7.0%) | 25 (5.0%) |
Stargardt Disease | 57 (13.0%) | 10 (17.5%) | 67 (13.5%) |
Leber Congenital Amaurosis | 8 (1.8%) | 15 (26.3%) | 23 (4.6%) |
Macular Dystrophy | 28 (6.4%) | 2 (3.5%) | 30 (6.0%) |
Other central condition | 7 (1.6%) | 3 (5.3%) | 10 (2.0%) |
Other widespread condition | 32 (7.3%) | 1 (1.8%) | 33 (6.7%) |
Highest level of education completed | |||
Primary school (up to 12 years of age) | 15 (3.4%) | 3 (5.3%) | 18 (3.6%) |
Secondary school (until at least 15 years of age) | 51 (11.6%) | 9 (15.8%) | 60 (12.1%) |
Trade certificate | 68 (15.5%) | 3 (5.3%) | 71 (14.3%) |
Bachelor degree at a University | 145 (33.0%) | 23 (40.4%) | 168 (33.9%) |
Post-graduate degree at a University | 144 (32.8%) | 15 (26.3%) | 159 (32.1%) |
I prefer not to say | 16 (3.6%) | 4 (7.0%) | 20 (4.0%) |
Previously supplied DNA to an IRD database | 310 (70.6%) | 39 (68.4%) | 349 (70.4%) |
Previously participated in medical research | 120 (27.3%) | 13 (22.8%) | 133 (26.8%) |
