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Table 1 Demographic characteristics

From: Rare disease patient matchmaking: development and outcomes of an internet case-finding strategy in the Undiagnosed Diseases Network

Demographics

Total (N = 385)

Pages not posted (N = 227)

Pages posted (N = 158)

Age

 Age in years (median (IQR))

10 (4, 24)

11 (4, 31)

9 (4, 17.25)

 Pediatric

66.7% (257)

60.8% (138)

75.3% (119)

 Adult

33.3% (128)

39.2% (89)

24.7% (39)

Sex, %, (n)

 Female

51.2% (197)

52.9% (120)

48.7% (77)

 Male

48.6% (187)

47.1% (107)

50.6% (80)

 Other

0.2% (1)

0% (0)

0.6% (1)

Race, %, (n)

 White

84.2% (324)

85.9% (195)

81.6% (129)

 More than 1 race

6.0% (23)

3.5% (8)

9.5% (15)

 Asian

4.4% (17)

5.3% (12)

3.2% (5)

 Black or African American

2.3% (9)

1.8% (4)

3.2% (5)

 Other race (not specified)

1.8% (7)

2.2% (5)

1.3% (2)

 American Indian or Alaska Native

0.5% (2)

0.9% (2)

0% (0)

 Race not provided

0.8% (3)

0.4% (1)

1.3% (2)

Ethnicity, %, (n)

 Not hispanic/Latinx

75.8% (292)

75.3% (171)

76.6% (121)

 Hispanic/Latinx

13.2% (51)

12.8% (29)

13.9% (22)

 Ethnicity not provided or unknown

10.9% (42)

11.9% (27)

9.5% (15)

Language, %, (n)

 English

96.6% (372)

96.0% (218)

97.5% (154)

 Spanish

3.1% (12)

3.5% (8)

2.5% (4)

 Kurdish

0.3% (1)

0.4% (1)

0% (0)