Table 1.
Demographics of participants
| Participant | Sex | Genetic status | Parent affected | Attends assessment with | Previous research experience | First-hand disease experience |
|---|---|---|---|---|---|---|
| 1 | M | Positive | Mother | Partner | No | Yes |
| 2 | F | Positive | Father | Partner | Yes | Yes |
| 3 | M | Positive | Mother | Alone | Yes | Yes |
| 4 | M | Positive | Mother | Partner | No | Yes |
| 5 | F | Positive | Mother | Partner | Yes | Yes |
| 6 | M | Negative | Father | Alone | Yes | Yes |
| 7 | F | Negative | Mother | Alone | No | Yes |
| 8 | F | Negative | Mother | Alone | No | Yes |
| 9 | F | Negative | Father | Alone | No | No |
| 10 | F | Negative | Father | Alone | Yes | Yes |