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Table 4 Involvement of CDG professionals and families in CT

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

  Professionals Families
Have you ever been involved (past and present situation) in the development of a CT for CDG?
(n = 46)
Have you ever participated in a CT for CDG?
(n = 82)
Yes 30.4% 23.2%
Yes, currently participating in a CT N.A. 1.2%
No 69.6% 70.7%
I don’t know N.A. 4.9%
  Professionals Families
Have you involved patients and/or patient representatives in the design of the CT?
(n = 14)
Were you involved in the design of the CT?
(n = 20)
Yes 64.3% 25.0%
No 35.7% 65.0%
No, and I didn’t know patients/participants/families could be involved in the design of a CT N.A. 10.0%
  Professionals Families
Have you informed the patients who participated in the CT about the results?
(n = 14)
Were you informed of the results of the CT in which you have participated?
(n = 20)
Yes 85.7% 35.0%
No, and the trial has already finished 14.3% 25.0%
No, but the trial is still ongoing 35.0%
I don’t know N.A. 5.0%