Table 6.

Participant attitudes to receiving information regarding opportunities to participate in medical research and participant data-sharing (n = 40)

	Number	Percent
Would you like to be informed about opportunities to participate in research via email or our website?
Yes	27	68
No	2	5
I don’t know	8	20
Would you like to be informed every time your registry data is shared with other researchers or pharmaceutical companies?
I would like to be informed on every occasion	17	43
I would like to be informed at regular intervals	14	35
There is no need to inform me	5	13
I don’t know	2	5