Table 4.
Specific informed consent options for the Cross-Sectoral Platform (SUEP) and High-Resolution Platform (HAP). The number of patients who agreed or refused to give specific consent was extracted from the trusted third party and reported in absolute numbers and as a proportion of the respondent population. For the SUEP, all options were available to all patients; for the HAP, some options were only available at certain study sites or at certain times, as indicated in the “total” column
| Specific consent | Yes | No | Total | |
|---|---|---|---|---|
| SUEP | Biosample collection | 1,373 (82%) | 310 (18%) | 1683 |
| Datatransfer to non-EU countries | 1,459 (87%) | 224 (13%) | 1683 | |
| Recontact for additional requests | 1,602 (95%) | 81 (5%) | 1683 | |
| Recontact for additional findings | 1,632 (97%) | 51 (3%) | 1683 | |
| Data collection from pretreating physicians | 1,634 (97%) | 49 (3%) | 1683 | |
| HAP | Datatransfer to non-EU countries | 388 (86%) | 62 (14%) | 450 |
| Recontact for additional findings | 422 (94%) | 28 (6%) | 450 | |
| Recontact for additional requests | 439 (98%) | 11 (2%) | 450 | |
| Genetic testing | 431 (96%) | 19 (4%) | 450 | |
| Additional blood samples for substudy | 78 (74%) | 28 (26%) | 106 | |
| Additional computed tomography | 128 (78%) | 37 (22%) | 165 | |
| Cooperation with industry partners | 220 (89%) | 27 (11%) | 247 |