Children with a confirmed or suspected diagnosis of cerebral visual impairment (CVI) are being sought by a new research initiative to find a better way to identify and classify people with the condition.
CVI covers all forms of visual problems that originate in the brain rather than the eye. While children with the condition can have very different strengths and weaknesses from each other, there is no formal classification system to assess the condition.
A University College London-Great Ormond Street Hospital Institute of Child Health (ICH) PhD student, Hanna Sakki, told OT that she hopes to change this.
Through her research project, she plans to assess 70 children aged between five and 15 who have or may have CVI, to see if it is possible to develop a classification system for the condition based on visual tests and behaviours.
“The other aim is to understand if we can develop a clinical multi-disciplinary assessment framework for CVI identification as a basis for diagnosis,” she explained.
To take part in the initiative, children will need to visit the ICH campus and undergo a series of tests to investigate different aspects of vision and related functions. However, Ms Sakki emphasised that the assessment is done at the child’s own pace and can be broken up over two days if necessary. The assessment is as child-centred as possible, with fun elements like stickers at the end of activities, she said.
“I’m very flexible as to how we do the tests,” she added.
To be eligible, children need to be aged between five and 15, have a medical history that indicates a high suspicion of CVI and an early origin of the condition, with concerns regarding their functional vision.
Ms Sakki said that children with all levels of cognitive functioning are welcome to participate in the project, which has received funding from the Ulverscroft Vision Research Group and the National Institute for Health Research.
As part of her thesis project, Ms Sakki is planning to conduct an evaluation of the resulting framework with clinicians who work with children with CVI, and would welcome contact from interested professionals.
Anyone interested in taking part in the research can contact Ms Sakki by emailing email@example.com or calling 020 7905 2986.
Image credit: Anthony Kelly