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Patient expectations from genetic ophthalmology services in the UK suggest additional supports may be required

A recent study commissioned by Fight for Sight has suggested that the needs and expectations of patients receiving diagnoses of retinal degeneration may significantly benefit from the inclusion of practical and psychosocial supports. The UK-based study, facilitated by the Manchester Biomedical Research Centre and Moorfields Eye Hospital Biomedical Research Centre, found that the expectations of families affected by retinal degeneration for clinical services are often of a complex and multi-disciplinary nature requiring input from a range of healthcare services. Aside from the currently used outcome parameters, the report suggests that the inclusion of a new domain, “Independence”, may provide additional value to empower patients in the optimal management of their retinal degeneration.