Skip to main content

Table 1 Demographic data for patients enrolled in the Contact Database and E-repository, and prior estimates in literature

From: Quantitative analysis of a rare disease network’s international contact database and E-repository provides insights into biobanking in the electronic consent era

Title Contact Database E-repository p-value* Talat & Schulte Liu et al.
N 891 166   384 128 iMCD
Age (Median ± SD)
 UCD 35 ± 14.8   30
 MCD 42 ± 15.7 0.6121 52 50
Patient Gender, N (%)    0.0022   
 Female 200 (49%) 44 (67%)   179 (47%) 54 (42%)
 Male 195 (51%) 22 (33%)   205 (53%) 74 (58%)
Patient Country of Origin, N (%)    0.0022   
 US 469 (72%) 117 (82%)  
 International 185 (28%) 26 (18%)  
Primary Diagnosis, N (%)    < 0.00012   
 Multicentric CD 206 (41%) 59 (51%)   101 (26%) 128
 Unicentric CD 168 (33%) 49 (42%)   283 (74%)
 Unknown 131 (26%) 8 (7%)  
Patient’s MCD Subtype Diagnosis, N (%)    0.4032   
 HHV-8-negative 117 (57%) 38 (64%)   128
 HHV-8-positive 21 (10%) 5 (8%)  
 Not sure or N/A 67 (33%) 16 (27%)  
  1. 1Student’s t-test p-value 2 Chi square p-value *p-value with Bonferroni correction (k = 21), a = .002