Skip to main content

Table 3 Involvement of CDG professionals and families in patient registries and NHS

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

Professionals Families
  Are you or have you been involved in a patient registry for CDG?
(n = 46)
  Have your clinical data ever been collected for a patient registry?
(n = 82)
Yes 34.8% Yes 40.2%
No 54.3% No 29.3%
No, and to the best of my knowledge, there are none for CDG 10.9% I don’t know 30.5%
Professionals Families
  Have you ever been involved in a NHS for CDG?
(n = 46)
  Have you ever participated in a NHS?
(n = 50)
Yes 23.9% Yes 22.0%
No 67.4% No 76.0%
No, and to the best of my knowledge, there are none for CDG 8.7% I don’t know 2.0%