Table 3.
Minimum Datasets for Each Broad Phenotypic Group
Phenotype/Data | VA | Perimetry | Color vision | OCT | FAF | EDT |
Macular dystrophy | 100 (12–18 months) | 45 | 91 | 100 (12–18 months) | 100 (12–18 months) | 100 (baseline) |
Cone dysfunction syndrome | 100 (12–18 months) | 55 | 100 (12–18 months) | 100 (12–18 months) | 100 (12–18 months) | 100 (baseline/5 years) |
Cone & cone–rod dystrophy | 100 (12–18 months) | 64 | 100 (BL/3 years) | 100 (12–18 months) | 100 (12–18 months) | 100 (baseline) |
Rod–cone dystrophy | 100 (12–18 months) | 91 | 55 | 100 (12–18 months) | 100 (12–18 months) | 100 (baseline) |
Rod system dysfunction syndrome/congenital stationary night blindness | 100 (12–18 months) | 64 | 64 | 100 (12–18 months) | 100 (12–18 months) | 100 (baseline) |
Chorioretinal dystrophy | 100 (12–18 months) | 82 | 64 | 100 (12–18 months) | 100 (12–18 months) | 91 |
Hereditary vitreoretinopathy | 100 (12–18 months) | 36 | 36 | 100 (12–18 months) | 100 (12–18 months) | 55 |
Percentages of responses supporting inclusion of each variable as part of a minimum dataset are given, along with the recommended frequency of repeat assessment. Where 100% agreement is reached, the variable was included in the registry as part of the minimum dataset.
EDT, electrodiagnostic testing; FAF, fundus autofluorescence.