Participation of adults with disorders/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population

Table 8 Participation in medical exams: general physical examination, gynaecological exam, urological exam per diagnosis group, country and gender

	General physical examination	Gynaecological examination^a	Urological examination^c
	Participation: total sample (%)	Participation: female gender (%)	Participation: male gender (%)
Diagnosis group
Turner syndrome	276/301 (91.7%)	123/301 (40.9%)	Not applicable
Klinefelter syndrome	186/218 (85.3%)	0/1	144/212 (32.1%)
XY DSD conditions	191/222 (86.0%)	92/142 (64.8%)	59/73 (80.8%)
CAH	210/226 (92.9%)	103/221 (46.6%)	1/5 (20.0%)
Other conditions^a	65/73 (89.0%)	28/52 (53.8%)	17/21 (81.0%)
Country
Germany	236/244 (96.7%)	94/182 (51.6%)	46/56 (82.1%)
France	258/274 (94.2%)	139/231 (60.2%)	32/43 (74.4%)
The Netherlands	204/250 (81.6%)	23/153 (15.0%)	59/97 (64.8%)
Poland	107/107 (100%)	44/45 (97.8%)	61/62 (98.4%)
Sweden	80/122 (65.6%)	46/73 (63.0%)	23/49 (46.9%)
The United Kingdom	43/43 (100%)	0/33	0/10
Gender
Female	647/717 (90.2%)	346/717 (48.3%)	^c
Male	270/311 (86.8%)	^b	221/311 (71.1%)
Other	11/12 (91.7%)	^b	^c

^aThese include the groups 47,XYY, XX gonadal dysgenesis, XX ovotestis, 46,XX males, and 45,X/46,XY + other Y
^bParticipation in gynaecological examination was evaluated only in females. Nevertheless, one male participant in Germany and in Poland as well as three participants with other gender received a gynaecological examination
^cParticipation in urological examination was evaluated only in males. Nevertheless, one female participant in Poland as well as four participants with other gender received a urological examination

ISSN: 1472-6823