Research

Within our group we are participating in a number of research projects & clinical trials.

Active & Recent Research Projects:

Childhood Epileptic Encephalopathies Database - An anonymised clinical and genetic research database of childhood epileptic encephalopathies including children with onset of epilepsy from birth to 16 years of age.

Envision - A multicenter, prospective, 2-year observational study in subjects aged 6 to 60 months, inclusive, with SCN1A-positive Dravet Syndrome The study is being conducted to characterize the phenotype of SCN1A-positive Dravet Syndrome in subjects aged 6 to 60 months and serve as an external control for an upcoming gene therapy clinical trial assessing the safety and efficacy of XXXX in the treatment of subjects with SCN1A-positive Dravet Syndrome.

Evaluation of an integrated carer-recorded video service to improve diagnosis and care for people with epilepsy - An evaluation project investigating the potenital benefits of vCreate Neuro including impact of the service on people with epilepsy and their carers, clinical effectiveness and safety, equity of service provision, user experience and cost effectiveness. We will also evaluation the feasibility of a deep-learning system to recognise seizures from carer recorded video in vCreate Neuro. 

Fenfluramine Study - A multi-center, double-blind, parallel-group, placebo-controlled study to assess the efficacy, safety and pharmacokinetics of XXXX when used as adjunctive therapy in paediatric and young adult subjects with Dravet Syndrome.

Genetic and Autoimmune Determinants of Childhood Epilepsy (GACE) - A prospective national Scottish population based study using next generation genetic sequencing and immune testing for all new onset epilepsies in children <3 years of age, in collaboration with the University of Oxford.

Genomics in the Investigation of Epilepsy (GenIE) - Phenotyping and whole genome sequencing in epilepsy in collaboration with the University of Oxford.

KIWE Trial - KIWE is a multicentre randomised trial to investigate the effectiveness and safety of the Ketogenic Diet in children with epilepsy under the age of 2 years, who have failed to respond to two or more anti-epileptic drugs.

Marigold Study - A clinical study to evaluate the efficacy, safety and tolerability of adjunctive IMP compared to placebo for the treatment of seizures in children and young adults with a genetically confirmed CDKL5 gene mutation.

Neurology Video Research Database - A database of video recordings, clinical data and classifications collected by patients taking part in the vCreate Neuro system who have consented to the use of their data for research. This database will provide a unique research resource including the development of machine learning algorithms for diagnosis of different epileptic and non-epileptic events.

Ring Chromosome 20 Natural History and Biomarker Study - A natural history study aiming to improve knowledge and health outcomes for individuals living with Ring Chromosome 20 syndrome.

SCN1A Natural History Study - A natural history study of SCN1A-related epilepsy in the United Kingdom with an aim to establish a national UK research and monitoring framework to prospectively study the natural history of SCN1A-related epilepsy and Dravet syndrome (DS). Dravet syndrome is the most common severe genetic epilepsy of childhood and is a model condition for developmental and epileptic encephalopathies. This study will facilitate improvements in standards of care, manage national and international clinical trials and clinical research.

vCreate Neuro - an secure video transfer technology to aid diagnosis, classification & management in neurology patients.