Table 4 Involvement of CDG professionals and families in CT
| Â | 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% |
| Â | 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% |
| Â | 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% |