Table 1.
Characteristics of fully enrolled ADPKD Registry participants at baseline
| Characteristic | All Patients (N=1563) |
|---|---|
| Age, yr, mean (interquartile range) | 44.5 (7–82) |
| Sex, n (%) | |
| Women | 1120 (72) |
| Men | 438 (28) |
| Nonbinary | 2 (0.1) |
| Transgender man | 2 (0.1) |
| Transgender woman | 1 (0) |
| Self-described race and ethnicity, n (%) | |
| White | 1425 (93) |
| Hispanic/Latinxa | 59 (4) |
| Black or African American | 36 (2) |
| Asian | 34 (2) |
| More than one race selected | 25 (2) |
| American Indian or Alaska Native | 8 (0.5) |
| Native Hawaiian or Other Pacific Islander | 1 (0) |
| Diagnostic testing, n (%) b | |
| Received a genetic test for ADPKD | 185 (12) |
| Diagnosed by an imaging test | 1336 (86) |
| Ultrasound | 989 (74) |
| MRI | 201 (15) |
| CT | 334 (25) |
| Not sure/don’t know | 78 (6) |
| Family history, n (%) | N=1432 |
| Positive family history | 1139 (80) |
| Reported on mother’s side | 555 (49) |
| Reported on father’s side | 572 (50) |
| No known family history | 190 (13) |
| Unknown family history | 103 (7) |
| Geographic area in the United States ( 8 ), n (%) | |
| Midwest | 346 (22) |
| Northeast | 373 (24) |
| Southeast | 345 (22) |
| Southwest | 170 (11) |
| West | 329 (21) |
| CKD disease stage ( 9 ), n (%) | |
| Stage 1 | 133 (9 |
| Stage 2 | 240 (15) |
| Stage 3a | 190 (12) |
| Stage 3b | 172 (11) |
| Stage 4 | 183 (12) |
| Stage 5 | 76 (5) |
| Unknown CKD stage | 265 (17) |
| Post-kidney transplant | 304 (20) |
ADPKD, autosomal dominant polycystic kidney disease; MRI, magnetic resonance imaging; CT, computed tomography.
a
Hispanic or Latino ethnicity assessed separately from race; overlap exists.
b
Participants could select more than one for diagnostic testing.