Table 2.
Number (percentage) of respondents (all, industry and other) that considered the governance-related questions importanta with p-values of Pearson tests for differences between industry and the other stakeholders
| All (N = 73) | Industry (N = 42) | Other (N = 31) | P-value | |
|---|---|---|---|---|
| How important are the following statements about data sharing in relation to governance of a registry?b | ||||
| Availability of a central contact point | 70 (96) | 41 (98) | 29 (94) | 0.25 |
| Data sharing across countries | 63 (86) | 36 (86) | 27 (87) | 0.75 |
| Data linkage to other data sources | 55 (75) | 33 (79) | 22 (71) | 0.07 |
| Request for additional information, if needed by external stakeholders | 52 (71) | 36 (86) | 16 (52) | <0.01 |
| How relevant is it for regulatory decision-making that registry data are shared with …?b | ||||
| Regulatory authoritiesc | 68 (94) | 39 (95) | 29 (94) | 0.69 |
| Academic centresc | 61 (85) | 36 (88) | 25 (81) | 0.18 |
| Pharmaceutical companiesc | 51 (71) | 37 (90) | 14 (45) | <0.01 |
| How acceptable is it that a registry is (partly) financed by ... if the data are to be used by regulators:b | ||||
| Regulatory authoritiesd | 66 (92) | 37 (88) | 29 (97) | 0.20 |
| Academiad | 60 (83) | 38 (90) | 22 (73) | 0.12 |
| Independent stakeholdersd | 57 (79) | 32 (76) | 25 (83) | 0.29 |
| Pharmaceutical companiesd | 56 (78) | 40 (95) | 16 (53) | <0.01 |
| Patientsd | 38 (53) | 26 (62) | 12 (40) | 0.11 |
| FAIR: Findable, Accessible, Interoperable, and Reusable - How important is it that the data of the registry should be FAIR?c | ||||
| (median, IQR) | 92 (81–100) | 92 (81–100) | 95 (82–100) | 0.89 |
IQR interquartile range
aAn element was considered important if ≥80% of the respondents gave it a score of important or very important
bSee ESM, for additional figures of all answers to the Likert scales
cOne missing from the respondents from industry
dOne missing from the respondents from the other stakeholders