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

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

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%)		–	–

¹Student’s t-test p-value ² Chi square p-value *p-value with Bonferroni correction (k = 21), a = .002

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