Table 2 Characteristics of study participants and eligible non-participants from the telephone intake call

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