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Strategies for Innovative Research to Improve Diagnosis, Prevention and Treatment in Children with Difficult to Treat Epilepsy – the Epileptic Encephalopathies Longitudinal Multicentre Omics Study (DESIRE-ELMO).

Why it matters

Epilepsies that seriously affect the normal development of cognition and behavior are termed “epileptic encephalopathies” (EEs). Landau-Kleffner syndrome (LKS), Continuous Spikes in Slow-Wave Sleep (CSWSS) and Benign Focal Epilepsy of Childhood with Status Epilepticus during Sleep (BFEC-SES) are EEs that affect children 3-9 years old. The cause of 80% of these EEs is unknown and the course of disease is highly variable. Some children respond to treatment with high dose steroids or benzodiazepine class of drugs; however, the response cannot be predicted ahead of time and some children suffer serious side effects or fail to respond to treatment. The purpose of this study is to find new causes for these EEs and to find markers in the blood that predict the course of disease and response to treatment. Hopefully the results will help us develop tests that accurately predict which treatments will work in patients BEFORE they are offered these drugs.

What we are doing

We are following the course of 100 patients with LKS, CSWSS or BFEC-SES across Europe from the time of diagnosis for up to 18 months to find blood biomarkers that can reveal clues of the cause or prediction of outcome.

When will this study be recruiting?

We are currently recruiting at sites in the UK, Italy, France, Germany, and Belgium.

What will participants be asked to do?

Children will undergo routine clinical care including periodic EEGs and neurodevelopmental assessments. They will be asked to take a blood test at baseline, at 1, 6 and 18 months after recruitment.

Who can take part?

Any child recently diagnosed with Landau-Kleffner syndrome (LKS), Continuous Spikes in Slow-Wave Sleep (CSWSS) and Benign Focal Epilepsy of Childhood with Status Epilepticus during Sleep (BFEC-SES).

Who is conducting the research?

Professor Deb Pal at King’s College London is the Chief Investigator of this study that is part of a large European programme of research on difficult to treat childhood epilepsy.

Who has reviewed this study?

The study is supported by the European Commission and has been reviewed by scientific experts.

Interested?

If you would like to find out more, please contact Robert McDowall by email at robert.mcdowall@kcl.ac.uk

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