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

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

Title	Joined E repository	Did not join	Rate of E-repository	Odds Ratio^a
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

ISSN: 1750-1172