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Oxford University Hospitals NHS Trust
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Dancing eye syndrome (also known as opsoclonus myoclonus syndrome)
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£66,294
A consortium of European clinicians is aiming to improve treatment pathways for children with dancing eye syndrome. Dr Ming Lim, based at Evelina Children’s Hospital, will lead the UK arm of this 8 country European study which is the first large-scale study of its kind.
Current situation
Opsoclonus myoclonus syndrome, also known as dancing eye syndrome, is a rare childhood neurological disorder presenting at around 18 months of age with jerky movements of the eyes and body, irritability and sleep disturbance. About half of affected children have a neuroblastoma, a childhood tumour, in the abdomen or chest. Many affected children show persistent symptoms including speech, learning, movement and behavioural problems. Dancing eye syndrome occurs in about one in a million children per year, and the rarity of the condition has made it difficult for clinicians to draw robust conclusions about the most effective treatment methods. Further research into the condition and optimal treatments for patients are needed.
How this project will help
Sparks is supporting a UK-based multicentre study led by Dr Lim which is part of a European project directed by a consortium of leading paediatric neurologists and oncologists from a number of countries.
Every child will have a detailed and uniform set of tests to rule out neuroblastoma. Recruited children will follow a systematic programme of drug therapy. Treatments will be modified according to the way children respond and there will be careful and detailed follow-up to at least 5 years old to determine efficacy. Results will be carefully studied to identify who does well and who does less well, and to learn what treatments and other factors affect outcome.
The results of the study will provide better treatment and management of children with dancing eye syndrome and will launch further treatment trials which are likely to involve a collaboration between Europe and the USA.
You can make a difference
Help make a difference to children with dancing eye syndrome, like Isla, and other rare diseases by getting involved with Sparks today.