Research went down a Re-treat
Between Thursday 11 and Friday 12 January 2018 saw Young Epilepsy hosting their eight annual Research Retreat.
Around a hundred clinicians, researchers and psychologists from University College London (UCL) and Great Ormond Street Institute of Child Health (GOS ICH) gathered to Holiday Inn Gatwick Worth. They showcased their work in front of The Prince of Wales’s Chair of Childhood Epilepsy, Professor Helen Cross OBE, and Professor Kees Braun of Utrecht University who was acting as ‘moderator’ during the two days.
The researches presented at the Retreat varied and sparked a great level of discussion, with the primary aim of delivering top level care and treatments for young people living with epilepsy. Among the professionals presenting included…:
- Sophie Adler and her team at GOS ICH, who are developing a computer software to analyse MRI scans. This would identify brain abnormalities among Great Ormond Street patients and is known as the Multi-centre Epilepsy Lesion Detection (MELD) study.
- Tim Tierney, who is working on the development of a new generation of magnetoencephalography (MEG) - which measures magnetic fields associated with brain's activity - with no running and manufacturing costs.
- Sarah Buck, who is using her research to fill the knowledge gap between children undergoing surgery for Temporal Lobe Epilepsy (TLE) and post-operative memory outcome, whilst developing protocols that evaluates the pre-operative status of memory functions.
- Professor Robin Williams's discovery of enhanced epilepsy control through combined treatment using Fycompa and dietary decanoic (such as the ketogenic diet). This would enable a reduction in dose of both while maintaining levels of seizure control.
- Jane Kung and Chloe Jones at GOS ICH, who are assessing behaviours and sleep of children in London and southeast England, with the aim to improving our understanding, thus boosting their quality of life. Diagnosing children under 12 months with epilepsy can be very difficult and it's both researchers' plans to improve this.
- Psychologist Sophie Bennett, who is developing a new module for NHS staff to bridge the gap between existing epilepsy and mental health services. At least half of young people with epilepsy have mental health problems.
- Young Epilepsy’s lead psychologists, Rachel Cole and Beccy Ballantine, who discussed the outcome measures of children they look after at the charity’s Assessment Centre, post-Rasmussen encephalitis / hemispherectomy. Most young people who have Rasmussen’s cannot access the standardised assessment used for formal research due to lack of cognition.
Young Epilepsy’s chief executive Carol Long, who attended both days, said:
As in previous years the breadth and depth of research presented at the retreat was impressive and covered areas of diagnosis, treatment and impact of epilepsy.
This Research Retreat really highlighted the fact that researchers, clinicians and psychologists are on the side of children and young people living with epilepsy. The passion to which everyone spoke was inspiring and their ambitious and ground-breaking plans are certainly going to improve young people’s lives for the better in the long-term.