Table 1.
Participant characteristics.
| Characteristic | Parents (N = 11) | Professionals (N = 19) |
|---|---|---|
| Gender | ||
| Female | 3 | 8 |
| Male | 8 | 11 |
| Age group (years) | ||
| 21–30 | 5 | 1 |
| 31–40 | 5 | 4 |
| 41–50 | 1 | 9 |
| 51–60 | 0 | 3 |
| >60 | 0 | 2 |
| Ethnicity | ||
| Asian British | 7 | Not applicable |
| White British | 3 | |
| Other | 1 | |
| Highest qualification | ||
| No qualification | 1 | Not applicable |
| High school | 5 | |
| Degree or equivalent | 6 | |
| Age of child at time of RGS | N = 10 | |
| ≤1 month | 4 | Not applicable |
| 1–9 months | 3 | |
| 1–2 years | 1 | |
| 10–15 years | 2 | |
| RGS findings for child | N = 10 | |
| Diagnosis | 5 | Not applicable |
| Partial diagnosis | 2 | |
| Variant of uncertain significance | 1 | |
| No findings | 2 | |
| Current role | Not applicable | |
| Scientist | 3 | |
| Genetic consultant | 5 | |
| Medical doctor trainee (consenter for the RaPS study) | 1 | |
| Non-genetic paediatric consultant | 10 | |
| Cardiology | 1 | |
| Endocrinology | 1 | |
| Immunology | 1 | |
| Intensive care | 1 | |
| Metabolics | 2 | |
| Nephrology | 1 | |
| Neurology | 2 | |
| Neuromuscular | 1 | |
| Years in current role | Not applicable | |
| 2–10 | 8 | |
| 11–20 | 8 | |
| 21–30 | 2 | |
| >30 | 1 | |