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2023 Australian Neurofibromatosis Clinical Symposium
2023 Australian Neurofibromatosis Clinical Symposium
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Orthoptist-led NF1 screening clinics at RCH, Melbourne

Lightning Talk

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Presentation Description

Screening for an optic pathway glioma in patients with NF1 is crucial in preventing vision reduction and neurological damage. Studies comparing screening strategies of NF1 centres in Europe and the USA identified a lack of uniformity in the frequency of reviews, duration of screening and ocular testing. 

To address the pressing need for a structured screening program at the Royal Children’s Hospital (RCH) and to provide a streamlined clinical service, the RCH Orthoptist-led NF1 screening clinic was implemented in 2016. This collaboration between the departments of ophthalmology and neurology at the RCH was developed for children diagnosed with NF1 and no known OPGs. 

Using evidence-based research from both departments, a strict protocol was designed. This clinic has created uniformity in NF1 ocular testing, provided regular appointment reviews, and increased clinic capacity and efficiency. 

A subsequent costing study was conducted, comparing orthoptist-led with consultant-led clinics for OPG screening of children with NF1. As health care carries a significant cost across all societies, we believe this study can help future health policy decision making for the allocation of ophthalmic screening resources to ensure patients with NF1 are screened appropriately and in a timely manner.

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