Table 1.
T21RS study characteristics grouped by data source (reported by clinician versus family/caregiver).
| Overall | Clinician survey | Family survey | |
|---|---|---|---|
| n | 1046 | 591 | 455 |
| Additional information through linked surveys (%)1 | 52 (5.0) | 27 (4.6) | 25 (5.5) |
| Country (%) | |||
| India | 405 (39.7) | 218 (37.8) | 187 (42.3) |
| United States | 163 (16.0) | 90 (15.6) | 73 (16.5) |
| Spain | 155 (15.2) | 113 (19.6) | 42 (9.5) |
| Brazil | 75 (7.4) | 32 (5.5) | 43 (9.7) |
| United Kingdom | 72 (7.1) | 27 (4.7) | 45 (10.2) |
| France | 67 (6.6) | 61 (10.6) | 6 (1.4) |
| Italy | 35 (3.4) | 20 (3.5) | 15 (3.4) |
| other2 | 47 (4.6) | 16 (2.8) | 31 (7.0) |
| Age in years (mean (SD)) | 29.35 (17.92) | 35.58 (18.12) | 21.26 (14.01) |
| Male (%) | 564 (54.0) | 336 (56.9) | 228 (50.3) |
| Ethnicity (%) | |||
| White | 440 (42.1) | 247 (41.8) | 193 (42.4) |
| South Asian | 414 (39.6) | 225 (38.1) | 189 (41.5) |
| Latin American | 49 (4.7) | 19 (3.2) | 30 (6.6) |
| Black | 17 (1.6) | 13 (2.2) | 4 (0.9) |
| Arab | 2 (0.2) | 1 (0.2) | 1 (0.2) |
| East Asian | 1 (0.1) | 1 (0.2) | 0 (0.0) |
| West Asian | 1 (0.1) | 1 (0.2) | 0 (0.0) |
| Admixed3 | 23 (2.2) | 13 (2.2) | 10 (2.2) |
| Unknown | 99 (9.5) | 71 (12.0) | 28 (6.2) |
| Living situation (%) | |||
| Living at home with family | 712 (73.3) | 307 (59.0) | 405 (89.6) |
| Living alone with support | 7 (0.7) | 4 (0.8) | 3 (0.7) |
| Small group home with support | 89 (9.2) | 71 (13.7) | 18 (4.0) |
| Residential care facility | 157 (16.2) | 134 (25.8) | 23 (5.1) |
| Other | 7 (0.7) | 4 (0.8) | 3 (0.7) |
| Type of trisomy 21 (%) | |||
| Full/standard | 784 (92.5) | 401 (93.0) | 383 (91.8) |
| Mosaic | 51 (6.0) | 24 (5.6) | 27 (6.5) |
| Partial trisomy | 4 (0.5) | 2 (0.5) | 2 (0.5) |
| Translocation | 9 (1.1) | 4 (0.9) | 5 (1.2) |
| Level of intellectual disability (%) | |||
| Borderline/normal/mild | 169 (18.1) | 77 (14.8) | 92 (22.3) |
| Moderate | 580 (62.2) | 314 (60.3) | 266 (64.6) |
| Severe/Profound | 184 (19.7) | 130 (25.0) | 54 (13.1) |
| Admitted to hospital (%) | 581 (56.0) | 388 (65.9) | 193 (43.1) |
| Days in hospital (mean (SD))4 | 12.90 (9.29) | 13.05 (8.50) | 12.62 (10.68) |
| Admitted to ICU (%)4 | 279 (49.6) | 185 (49.7) | 94 (49.5) |
| Days in ICU (mean (SD)) 4 | 8.46 (4.91) | 8.57 (4.85) | 8.25 (5.04) |
| Mechanical ventilation (%)4 | 207 (28.5) | 131 (24.9) | 76 (37.8) |
| Clinical situation at last evaluation (%) | |||
| Currently in hospital with symptoms | 136 (13.7) | 85 (14.9) | 51 (12.0) |
| Died | 131 (13.2) | 114 (20.0) | 17 (4.0) |
| Not currently in hospital but with symptoms | 130 (13.1) | 46 (8.1) | 84 (19.8) |
| Other | 27 (2.7) | 5 (0.9) | 22 (5.2) |
| Recovered from COVID-19 | 547 (55.0) | 303 (53.1) | 244 (57.5) |
| Tested positive but still no symptoms | 24 (2.4) | 18 (3.2) | 6 (1.4) |
1
When both the clinician and caregiver/family member surveys were completed for a participant with DS (linked survey), information from each source were combined (clinician linked to the family survey and family linked to the clinician survey, see methods for more details
2
countries with fewer than 10 individuals were summarized as “other”. These include Argentina (4 cases), Germany (4 cases), Mexico (4 cases) and other countries with <4 cases reported. 3The category “admixed” refers to individuals who selected more than one ethnic groups. 4Only answered if admitted to hospital; % were calculated after excluding missing information