FOR PROFESSIONALS - RESEARCH
Please note that the following links & guidelines do not replace other teaching resources and those professionals using these guidelines are encouraged to attend the Paediatric Epilepsy Training (PET) courses run through the BPNA (British Paediatric Neurology Association).
CASTLE: Changing Agendas on Sleep Treatment and Learning in Epilepsy (CASTLE) Programme: CASTLE is a six year NIHR programme around common problems in childhood epilepsy. Among its components are the development of a sleep behaviour intervention for families of children with epilepsy; the first ever core outcome measurement set for childhood epilepsy with input from parents and young people as well as professionals; and at the heart of the programme is a randomised controlled trial to evaluate whether treatment or no treatment is best for children newly diagnosed with rolandic epilepsy (aka BECTS). The trial will also examine interactions between drug treatment and sleep behaviour intervention in broad outcomes. The programme is led by Prof Deb Pal at King’s College London and Prof Paul Gringras at Evelina London Children’s Hospital. We encourage all SETPEG Trust sites to fill out an expression of interest form (below) and return it to the Trial Coordinator in Liverpool. Full information at castlestudy.org.uk
BIOJUME: Biology of Juvenile Myoclonic Epilepsy (BIOJUME) Programme: BIOJUME is a five year Canadian Institute of Health Research funded programme on JME. The major goal of the programme is to discover the genetic determinants of the key clinical features of JME including not just the seizures but also what influences timing, severity, impulsiveness and drug response. One part is a family study which seeks to deeply phenotype first degree family members of JME patients and find heritable traits eg in neuropsychology. Another project seeks to map the genes for abnormalities in EEG derived connectivity measures. The major project is an international genome wide association study with a target of 1,000 patients. Recruitment will continue into 2019 and more than 35 UK Trusts have opened the study. Check with our research manager if your Trust has approved the study Robert.firstname.lastname@example.org. More details at www.childhoodepilepsy.org
REGAIN: Rolandic Epilepsy Genomewide Association International Study (REGAIN): Building on the success of our previous genetic linkage studies showing strong genetic influences on centrotemporal sharp waves, reading and speech difficulties, we have launched an enhanced international effort to map all the genetic determinants on Rolandic epilepsy and its comorbid traits and to improve the predictive ability of a diagnostic biomarker from blood. Recruitment is very easy – the parent fills in a questionnaire, which takes just 15 minutes, helped by the child who is asked about their sleep preferences – and there is a single blood test. The “child” doesn’t have to have active seizures, and can be up to 25 years of age so many old patients will be eligible. More details at www.childhoodepilepsy.org