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