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Table 1 Participant demographics

From: The International X-Linked Hypophosphatemia (XLH) Registry: first interim analysis of baseline demographic, genetic and clinical data

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)

  1. 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
  2. Percentage denominators are the number of participants for whom data was reported in that category
  3. SD standard deviation
  4. aAge, race and treatment of 2 female participants not captured
  5. bData taken from a single centre as part of an existing country-wide Kyowa Kirin International–sponsored investigator-initiated study
  6. cData taken from a single centre as part of an existing and independent country-wide FGF23-related disease registry
  7. dFirst data entry in the registry