Table 1.

Sites enrolled in the ASH RC’s SCD Data Hub program and actively submitting data and enrollment of individuals living with SCD

VariableN (%)
Sites 22 
Pediatric 10 (46) 
Adult 8 (36) 
Both pediatric and adult 4 (18) 
Academic 22 (100) 
Community 0 (0) 
Patients 27 318 
Age 24 years (median) 
<3 726 (3) 
3 to <18 7 151 (26) 
≥18 19 782 (72) 
Sex  
Female 14 895 (55) 
Male 12 422 (45) 
Race  
American Indian or Alaska Native 29 (0.1) 
Asian 197 (0.7) 
Black or African American 23 160 (84.5) 
Native Hawaiian or Other Pacific Islander 24 (0.1) 
White 1 148 (4.2) 
Not reported 1 442 (5.3) 
Unknown 1 318 (4.8) 
VariableN (%)
Sites 22 
Pediatric 10 (46) 
Adult 8 (36) 
Both pediatric and adult 4 (18) 
Academic 22 (100) 
Community 0 (0) 
Patients 27 318 
Age 24 years (median) 
<3 726 (3) 
3 to <18 7 151 (26) 
≥18 19 782 (72) 
Sex  
Female 14 895 (55) 
Male 12 422 (45) 
Race  
American Indian or Alaska Native 29 (0.1) 
Asian 197 (0.7) 
Black or African American 23 160 (84.5) 
Native Hawaiian or Other Pacific Islander 24 (0.1) 
White 1 148 (4.2) 
Not reported 1 442 (5.3) 
Unknown 1 318 (4.8) 

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