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Prevalence and clinical outcome of Rasmussen Encephalitis in children

Rasmussen Encephalitis is a rare progressive inflammatory disorder of one side of the brain which leads to seizures, cognitive decline and gradual loss of function of one side of the body. It nearly always begins in childhood. There are many unanswered questions regarding the cause, spectrum of disease, natural progression and management. There is also no national data on the outcome for these children.

Aim

To collate information on the prevalence, symptomology, management and outcome of children with Rasmussen syndrome in the UK. This monitoring study of the rare but significant syndrome will provide us with information as to initial history, and response to treatment, including timing of surgery. We hope this will lead to plans for further trials.

Outline plan

Invite all paediatric neurologists in the UK to report if they are managing any patients with Rasmussen Encephalitis. Anonymous questionnaires will be completed to give information on the presentation of the disease, management, and outcome for each child. The information can then be used to examine trends which we hope will give a greater insight into this disorder and point the way for further research into its cause and treatment.

Update

Information has been collated from clinitcians across the UK, with 21 cases identified including four new diagnoses during the study period. Results will be published in the coming year.

Investigators

Kate Lamb, Will Scott, Robert Robinson, Sophia Varadkar, Helen Cross.

Read more about our other research projects

Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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