Advertisement
Table 2 Characteristics of study participants and eligible non-participants from the telephone intake call
| Recruited | Non-participation | Participation | |
|---|---|---|---|
| N | N (%) | N | |
| Study Centers | |||
| - Germany: | |||
| North | 130 | 17 (13%) | 113 |
| East | 91 | 17 (19%) | 74 |
| South | 119 | 16 (13%) | 103 |
| West | 116 | 19 (16%) | 97 |
| - Switzerland | 29 | 3 (10%) | 26 |
| - Austria | 26 | 0 (0%) | 26 |
| First contact based on | |||
| - Medical institutions/physician | 439 | 61 (14%) | 378 |
| - Self-help groups | 44 | 4 (9%) | 40 |
| - Internet | 12 | 3 (25%) | 9 |
| - Other (e.g. friends, school, print media) | 16 | 4 (25%) | 12 |
| Sex of rearing in children/recent gender in adults | |||
| - Male | 144 | 20 (14%) | 124 |
| - Female | 367 | 52 (14%) | 315 |
| Age groups | |||
| - Newborns | 24 | 1 (4%) | 23 |
| - 6 months – 3 years | 85 | 11 (13%) | 74 |
| - 4 – 7 years | 84 | 4 (5%) | 80 |
| - 8 – 12 years | 97 | 11 (11%) | 86 |
| - 13 – 16 years | 80 | 14 (17%) | 66 |
| - Adults | 141 | 31 (22%) | 110 |
| Time of the presumptive diagnosis | |||
| - Prenatal | 14 | 2 (14%) | 12 |
| - Perinatal | 302 | 29 (10%) | 273 |
| - Postnatal ≤ 1 week | 29 | 0 (0%) | 29 |
| - Later | 117 | 12 (10%) | 105 |
| - Unknown | 49 | 29 (59%) | 20 |
| Inclusion criteria | |||
| - Gonadal dysgenesis | 81 | 8 (10%) | 73 |
| - Disorders of androgen synthesis | 21 | 2 (10%) | 19 |
| - Androgen insensitivity | 60 | 8 (13%) | 52 |
| - Congenital adrenal hyperplasia (CAH) | 202 | 28 (14%) | 174 |
| - Hypospadia | 72 | 4 (6%) | 68 |
| - Other criteria (e.g. micropenis, complex malformation of the urogenital tract) | 44 | 9 (20%) | 35 |
| - Suspected diagnosis of DSD | 42 | 15 (36%) | 27 |
| - Unknown diagnosis of DSD | 1 | 1 (100%) | 0 |
