Table 4 Completeness of data in the I-DSD and I-CAH Registries in core data, according to disorders and in optional data by centres
Data | Scope | Variables | Completeness <50% | Completeness 50–75% | Completeness ≥75% |
|---|---|---|---|---|---|
Optional Core data | All cases in I-DSD and I-CAH Registries n1 = 2155 | n = 2 -Actual diagnosis -Age of first presentation | - | - | 99% 80% |
All data | Data in each disorder in all cases in the I-DSD and I-CAH Registries n1 = 2155 (CAH Longitudinal module excluded) | n = 61 | -Other (n1 = 144) | -Disorder of gonadal development (n1 = 418) Disorder of androgen synthesis (n1 = 247) -Non specific disorder of under masculisation (n1 = 209) -Persistant Müllerian Duct Syndrome (n1 = 15) -Cloacal anomaly (n1 = 4) -CAH (n1 = 604) | -Disorder of androgen action (n1 = 474) -Leydig Cell Defects (n1 = 23) -Defects of Müllerian development (n1 = 17) |
Optional data | Data by centre in the I-DSD Registry n1 = 1551 | n = 55 | n3 = 17 n2 = 2 (1-224) | n3 = 9 n2 = 26 (6-91) | n3 = 20 n2 = 18 (1-122) |
Optional data | Data by centre in the I-CAH Registry n1 = 604 | n = 55 | n3 = 14 n2 = 16 (1-54) | n3 = 10 n2 = 15 (5-59) | n3 = 7 n2 = 2 (1–26) |
Optional data | Longitudinal module in the I-CAH Registry n1 = 173 | n = 47 | n3 = 2 n1 = 29 | n3 = 2 n1 = 50 | n3 = 11 n2 = 26 (4-72) |