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Reporting on Australian childhood visual impairment: the first 10 years



Visual impairment is rare but has significant impact on the neurobehavioural development and quality of life of children. This paper presents the key findings from the Australian Childhood Vision Impairment Register, which commenced in 2008 to report on children diagnosed with permanent visual impairment.


Families consent to completing a data form related to their child and for contact with the child’s ophthalmologist. Ophthalmologists complete and return a comprehensive data form on the child’s primary and secondary ocular diagnoses, associated disabilities and health conditions, visual acuity and visual fields. Data is stored on a secure database and anonymised data is available to researchers and for planning purposes.


Nine-hundred four children and their families provided informed consent for participation, with 57% males and 43% females. Most children spoke English in their home. Eighty-three percent of children were born full term, with a birth weight of >2500 g (81%). Children were commonly suspected to have visual impairment by a parent, with 68% of families receiving a diagnosis of visual impairment by their child’s first birthday. The most common primary diagnoses were retinal dystrophy (17%), CVI (15%) and Albinism (11%). A secondary diagnosis of infantile nystagmus occurred in 33% of children. Additional disabilities and/or developmental delay were reported for 44% of children. Corrected binocular visual acuity was reported for 75% of children, with moderate visual impairment being most common.


These findings contribute to knowledge of rare diseases affecting the eye and visual pathway and represent Australian childhood visual impairment.

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Fig. 1: The registration process.
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ACVIR is fully funded by NextSense. The contribution made by Professor John Ravenscroft to initially establish ACVIR is gratefully acknowledged. The collective and ongoing commitment to ACVIR by NextSense, families, clinicians, and low vision, disability and educational providers is also recognised. Every family and clinician who has returned a data form is thanked. Without this support, reporting would not be possible, and the needs of Australian children with VI may be unrecognised and thus remain unmet. The project supporting this research is solely funded by NextSense Australia.

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The authors agreed that each has made a significant contribution to this paper, including analysis, interpretation, and writing; deciding on the journal for potential publication; reviewing and agreeing on all versions of the paper; agreeing on all changes made at the proofing stage; agreeing to take responsibility and be accountable for the contents of the article; and agreeing to share responsibility for resolving any questions raised about the accuracy and integrity of the published work. SS: 70%, FM: 10%, MF: 10%, HR: 10%.

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Correspondence to Susan Silveira.

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Silveira, S., Martin, F.J., Flaherty, M. et al. Reporting on Australian childhood visual impairment: the first 10 years. Eye 36, 1412–1418 (2022).

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