Development of vision and nystagmus in Infantile Nystagmus Syndrome
Research type
Research Study
Full title
Development of visual function and the nystagmus waveform in Infantile Nystagmus Syndrome (INS)
IRAS ID
208911
Contact name
Maria Theodorou
Contact email
Sponsor organisation
Moorfields NHS Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
This study aims to look at how vision and wobbly eyes develop in infants and children who develop nystagmus (involuntary wobble of the eyes) in infancy - also known as congenital nystagmus / infantile nystagmus syndrome (INS). People with INS invariably have reduced vision, with greater effects on the vision than standard tests show. There is no gold standard treatment available although evidence is slowly emerging.
The aims of this study are to look at how vision develops in the immature visual system and document the natural history of the disease. This may provide evidence for offering earlier treatments in younger children while the visual system is still developing, eventually improving the final visual outcome in adulthood and minimising the effect of nystagmus on vision.
30 infants/children will be recruited. Recruitment is expected to be from: the paediatric nystagmus clinic based at Moorfields Eye Hospital; general paediatric clinics based at Moorfields City Road and it's satellites; general and neuro-ophthalmic clinics based at Great Ormond Street Hospital.
Subjects will be reviewed up to 4 times at approximately 4 month intervals over 1 year. At each visit visual acuity will be assessed, aswell as eye movements, including a detailed recording of the nystagmus.
The results of the study will allow clinicians to be able to explain more clearly what to expect with regards to the delayed visual maturation, and how to manage this. It will also allow clinicians to practice evidence based medicine when it comes to the timing of treatment, which is not clear at present and causes much concern, and often confusion, to parents of young children with nystagmus.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
16/WM/0324
Date of REC Opinion
29 Jul 2016
REC opinion
Further Information Favourable Opinion