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