Table 1.
Participant demographics
| Characteristic | Participants (N = 579) | |
|---|---|---|
| Sex, n (%) | ||
| Female | 374 (64.6) | |
| Male | 205 (35.4) | |
| Age, years, n (%)a | (N = 577) | |
| Pediatric | 360 (62.4) | |
| < 1 | 5 (0.9) | |
| 1 to < 5 | 68 (11.8) | |
| 5 to < 12 | 165 (28.6) | |
| 12 to < 18 | 122 (21.1) | |
| Adult | 217 (37.6) | |
| 18 to < 30 | 56 (9.7) | |
| 30 to < 50 | 96 (16.6) | |
| ≥ 50 | 65 (11.3) | |
| Age at enrolment, years, mean (SD) [median] | ||
| Overall | 21.7 (18.7) [13.6] | |
| Pediatric | 9.5 (4.5) [9.9] | |
| Adult | 41.9 (15.5) [41.1] | |
| Race, n (%)a | (N = 577) | |
| White | 374 (64.8) | |
| Black or African American | 11 (1.9) | |
| Asian | 6 (1.0) | |
| American Indian or Alaska Native | 1 (0.2) | |
| Not applicable/not collected as per local regulations | 143 (24.8) | |
| Unknown | 27 (4.7) | |
| Other | 15 (2.6) | |
| Country, n participants enrolled (sites enrolled) | ||
| Belgium | 6 (4) | |
| Bulgaria | 0 (2) | |
| Denmark | 12 (5) | |
| France | 141 (7) | |
| Germanyb | 46 (1) | |
| Ireland | 1 (1) | |
| Israel | 0 (2) | |
| Italy | 36 (10) | |
| The Netherlandsc | 18 (1) | |
| Norway | 6 (3) | |
| Portugal | 4 (5) | |
| Slovakia | 0 (1) | |
| Slovenia | 2 (1) | |
| Spain | 38 (10) | |
| Sweden | 35 (3) | |
| United Kingdom | 234 (21) | |
| Treatment distribution at baseline, n (%)a,d |
Pediatric (N = 360) |
Adult (N = 217) |
| Burosumab | 165 (45.8) | 13 (6.0) |
| Conventional therapy only | 114 (31.7) | 99 (45.6) |
| Untreated | 2 (0.6) | 6 (2.8) |
| Not reported | 79 (21.9) | 99 (45.6) |
N represents number of participants in the main categories: total pediatric participants, total adult participants and total participants. n represents the number of participants within each characteristic
Percentage denominators are the number of participants for whom data was reported in that category
SD standard deviation
aAge, race and treatment of 2 female participants not captured
bData taken from a single centre as part of an existing country-wide Kyowa Kirin International–sponsored investigator-initiated study
cData taken from a single centre as part of an existing and independent country-wide FGF23-related disease registry
dFirst data entry in the registry