|
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
|
