| 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) |