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Table 3 Relationships between consent preferences, communication frequency and information type

From: Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences

  Preferred consent model if asked to share their data from their original cohort. Consent should be reviewed…
Each time dataset is shared n(row/column%) Periodically n(row/column%) Never n(row/column%) p-value
Are you interested in receiving information about projects that arise from the study you participated in?
 Yes 73 (24.58/97.33) 92 (30.98/86.79) 132 (44.44/81.48) 0.004
 No 2 (4.35/2.67) 14 (30.43/13.21) 30 (65.22/18.52)
Are you interested in receiving information about the general findings from the dataset you contributed to?
 Yes 68 (22.59/90.67) 92 (30.56/86.79) 141 (46.84/87.04) 0.684
 No 7 (16.67/9.33) 14 (33.33/13.21) 21 (50.00/12.96)
Are you interested in receiving information about the general findings from all the data at the data repository?
 Yes 36 (29.75/48.00) 34 (28.10/32.08) 51 (42.15/31.48) 0.033
 No 39 (17.57/52.00) 72 (32.43/67.92) 111 (50.00/68.52)
Are you interested in receiving information about any changes made to the data repository?
 Yes 35 (25.55/46.67) 49 (35.77/46.23) 53 (38.69/32.72) 0.035
 No 40 (19.42/53.33) 57 (27.67/53.77) 109 (52.91/67.28)
Based on the information you would like to receive, how often would you most like to hear from the data repository?
 Anytime new information arises 30 (34.09/41.10) 17 (19.32/16.04) 41 (46.59/26.11) 0.003
 Every 6 months 23 (23.71/31.51) 33 (34.02/31.13) 41 (42.27/26.11)
 Once a year 18 (13.43/24.66) 52 (38.81/49.06) 64 (47.76/40.76)
 Every other year 2 (11.76/2.74) 4 (23.53/3.77) 11 (64.71/7.01)
Please indicate your most preferred method of contact.
 A personalized email 41 (23.98/55.41) 60 (35.09/57.14) 70 (40.94/43.75) 0.060
 A general newsletter 21 (15.67/28.38) 39 (29.10/37.14) 74 (55.22/46.25)
 A secure, regularly-updated website only open to participants 9 (33.33/12.16) 5 (18.52/4.76) 13 (48.15/8.12)
 A secure, regularly-updated website open to the public 3 (42.86/4.05) 1 (14.29/0.95) 3 (42.86/1.88)