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Table 5 Views and perceptions of families’ involvement in research projects among CDG professionals and families

From: Stakeholders’ views on drug development: the congenital disorders of glycosylation community perspective

  Professionals Families
Do you think patients should have a voice in research projects?
(n = 46)
Given the opportunity, would you be willing to participate in research as a patient/family member?
(n = 82)
Yes 87.0% 86.6%
No 4.3% 1.2%
I don’t know 8.7% 12.2%
  Professionals Families
Have you been involved in any research projects/groups that attempted to incorporate the patient voice?
(n = 46)
Have you as a patient/family member ever been a research participant?
(n = 82)
Yes 67.4% 41.5%
No 28.3% 51.2%
I don’t know 4.3% 7.3%