Incidence and patterns of detection and management of childhood-onset hereditary retinal disorders in the UK
- Hamblion, Esther L.
- Moore, Anthony T.
- Rahi, Jugnoo S.
- Votruba, Marcela
- e British Childhood Onset Hereditary Retinal Disorders Network
DOIAbstract
Background: A prospective, national population-based cross-sectional study to enable understanding of the burden and management in the UK of hereditary retinal disorders presenting in childhood. Methods: Children aged <16 years with a new diagnosis of an inherited retinal disorder made between September 2006 and February 2008 in the UK were identified through two national active surveillance schemes. Clinical and socio-demographic information was collected on each child at diagnosis and 9 months later using standardised questionnaires. Results 241 patients were reported with 24 distinct diagnoses. 14% had additional systemic disorders and 13% had dual sensory impairment. Annual incidence was 1.4/100 000 children (aged 0–15 years) and ...
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