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Table 9 Research on condition

From: Survey of healthcare experiences of Australian adults living with rare diseases

  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 participationb,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
  1. aAmong those who know of a patient registry for their condition (n = 150)
  2. bAmong those who had participated in research (n = 260)
  3. cMultiple responses reported