Table 2

Current practices of involving patients and patient research partners in registry studies (n=41)

Practicesn (%)
None12 (29)
I have undertaken patient interviews7 (17)
I have conducted patient focus groups11 (27)
I have worked with patients in designing these studies13 (32)
I have involved patient organisations in the recruitment of study participants13 (32)
I have involved patients in our research or management team13 (32)
Others12 (29)