Better futures for young lives with epilepsy and associated conditions

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Epilepsy in infancy: relating phenotype to genotype (EPIPEG)

A high proportion of children with epilepsy under 12 months of age currently remain without a specific diagnosis. Our goal is to improve treatments for children with epilepsy by studying new patients and their response to treatment.

Aim

To improve diagnosis and treatment outcome for young people with epilepsy by studying newly presenting patients, under 12 months of age, and their response from treatment. A clinical database will be established to be used as a resource for health practitioners when determining the best course of treatment for a particular diagnosis.

What this means

We aim to understand much more about early onset epilepsies to help families to understand what to expect in terms of prognosis, developmental outcome and treatment. We are investigating genetics in order to support targeted treatment and for this treatment to start as early as possible, thereby reducing the burden on the infant and family.

Update

Site recruitment was closed in February 2017 with 53 active sites across South East England (80% uptake). Over 160 patients have been referred to date with emerging cohort trends such as greater proportion of patients being male and an unexpectedly high prevalence of family history of epilepsy. We have begun the sleep study arm of the project and are starting the genetic investigation phase. The recruitment period was extended until 30 October 2017.

Investigators

Helen Cross, Manju Kurian, Rod Scott, Christin Eltze, Finbar O’Callaghan, Michelle De Haan, Elaine Hughes, Jane Kung, Manuela Pisch, Katharina Vezyroglou, Chloe Jones, Judith Kalser.

Read more about 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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