Survey of healthcare experiences of Australian adults living with rare diseases

Table 9 Research on condition

	Number of people	% of Response
Would join registry if one existed (n = 741)
Yes	657	88.6
No	13	1.8
Don’t know	71	9.6
Know of a patient registry (n = 737)
Yes	150	20.3
No	587	79.7
Joined a patient registry that they know of ^a (n = 149)
Yes	135	90.6
No	4	2.7
Unsure	9	6.0
Would prefer not to say	1	0.7
Informed of clinical trials (n = 741)
Yes	184	24.8
No	515	69.5
Don’t know	42	5.7
Given enough information about clinical trials (n = 728)
Yes	121	16.6
No	487	66.9
Don’t know	120	16.5
Given enough information about research in general (n = 735)
Yes	142	19.3
No	520	70.8
Don’t know	73	9.9
Ever participated in research (n = 746)
Yes	248	33.2
No	479	64.2
Unsure	19	2.5
Type of research participation^b,c (n = 248)
Being on a registry	90	36.3
Clinical trial	81	32.7
Recruiting others to participate in clinical trials	17	6.9
Providing samples for research	139	56.0
Patient representative	10	4.0
Survey	25	10.1
Other	27	10.9

ISSN: 1750-1172