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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)