Current practices of involving patients and patient research partners in registry studies (n=41)
| Practices | n (%) |
| None | 12 (29) |
| I have undertaken patient interviews | 7 (17) |
| I have conducted patient focus groups | 11 (27) |
| I have worked with patients in designing these studies | 13 (32) |
| I have involved patient organisations in the recruitment of study participants | 13 (32) |
| I have involved patients in our research or management team | 13 (32) |
| Others | 12 (29) |