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

From: Clinical evaluation study of the German network of disorders of sex development (DSD)/intersexuality: study design, description of the study population, and data quality

  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