Studies looking at national data were needed to find out how many children had vision impairment due to causes like congenital cataracts, amblyopia (which is sometimes called a squint or lazy eye), paediatric glaucoma, and inherited disorders. These studies also assessed the effectiveness and safety of treatments.
Researchers collected information about children with vision problems and their treatment from the eye specialists (ophthalmologists) and other doctors caring for them.
The studies showed for the first time that there are major differences in the risk of vision problems for children depending on their levels of deprivation, ethnicity, birthweight and other factors in early life. It also found that children with vision problems today often have other disabilities and more complex needs than they did in the past.
What were the benefits?
The studies are unique in describing how many and which children are affected by vision impairment and blindness. It has become the international standard for describing the burden of childhood vision impairment across the world.
The NHS policy on universal childhood vision screening has been updated based on findings from these studies. The Royal College of Ophthalmologists has used the information to plan services for children.
The research has provided a baseline for more work to understand whether new treatments are safe and effective.
What type of data was involved?
The studies used the British Paediatric Surveillance Unit (BPSU) and British Ophthalmological Surveillance Unit (BOSU) to identify children to include in the studies. Because these are rare diseases, it is very important to collect data on every child that has serious vision problems and it was necessary to get this data directly from specialists and hospital doctors.
Researchers collected clinical information about each case from hospital records from doctors who looked after children with vision impairments. While data about individual children was de-personalised, the data was not completely anonymous as the researchers needed to link information on the same child being reported by more than one doctor.
What was the legal basis for accessing the data?
Ethical approval for this study was granted by the London Bloomsbury Research Ethics Committee. Permission was also granted to collect patient identifiable information under a Section 251 approval of the NHS Act 2006. Section 251 allows researchers to use identifiable data when it is not possible to get consent from every patient. All patients can opt out of their data being used.
Who funded and collaborated on this work?
The study was funded by Fight for Sight. Researchers at UCL Great Ormond Street Institute of Child Health worked in collaboration with the Royal National Institute of Blind People.
Where can I go for more information?
Follow Robert and his health data on their trip. How does Robert's health data move along with him? And how can his health data be reused?
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