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Table 4 Odds Ratios of joining E-repository for Significant Characteristics

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 Joined E repository Did not join Rate of
E-repository
Odds Ratioa
Patient’s Gender n = 395
 Male 22 178 11.0% 0.60
 Female 44 151 22.6% 1.24
Patient’s Year of Birth n = 721
 1930–1940 0 12 0.0% 0.00
 1941–1950 9 25 26.5% 1.45
 1951–1960 16 84 16.0% 0.88
 1961–1970 48 127 27.4% 1.51
 1971–1980 27 124 17.9% 0.98
 1981–1990 34 100 25.4% 1.39
 1991–2000 5 74 6.3% 0.35
 2001–2010 2 19 9.5% 0.52
 2011–2018 5 10 33.3% 1.83
Patient’s Primary Diagnosis n = 505
 Multicentric CD 59 147 28.6% 1.57
 Unicentric CD 49 119 29.2% 1.60
 Unsure or Not officially diagnosed 8 123 6.1% 0.34
Date of Registration n = 874
 Jul-Dec 2014 30 86 25.9% 1.42
 Jan-Jun 2015 26 113 18.7% 1.03
 Jul-Dec 2015 31 71 30.4% 1.67
 Jan-Jun 2016 35 103 25.4% 1.39
 Jul-Dec 2016 17 87 16.3% 0.90
 Jan-Jun 2017 7 138 4.8% 0.27
 Jul-Dec 2017 6 124 4.6% 0.25
Participant’s Preferred Method of Communication n = 449
 Email 66 340 16.3% 0.89
 Phone 7 25 21.9% 1.20
 Phone, email 11 0 100.0% 5.49
Participant’s Relationship to Patient n = 811
 Patient 150 380 28.3% 1.55
 Family 9 209 4.1% 0.23
 Friends 2 61 3.2% 0.17
  1. aOverall average 18.2%