Dravet Syndrome UK are delighted to be collaborating with Epilepsy Action in order to fund this 2013 research award. Incidence of SUDEP (Sudden Unexpected Death in Epilepsy Patients) in patients with Dravet syndrome is slightly higher than in other epilepsies, therefore understanding the cause of SUDEP would go a long way in helping to prevent it.
Dravet Syndrome UK Professional Advisor Sameer Zuberi believes that the best way to try and prevent SUDEP is to achieve the best level of seizure control possible. By the age of 7 years, 5/88 (6%) children with Dravet syndrome born in the UK between 2003 and 2007 had died due to SUDEP (3) or status epilepticus (2).
In outlining the study Professor Sisodiya states “we plan a pilot study evaluating ECG, both routine and 24 hour recordings, on 20 children with Dravet syndrome both when they are well and also at times when they are unwell.
This study will determine whether cardiac abnormalities may be aggravated at times of illness, which in turn would have implications for management and monitoring at times of illness. Identification of illness-related ECG abnormalities might also lead to studies of acute preventative therapies at such times”.
The research aims to determine whether Dravet patients show evidence of cardiac rhythm dysfunction that is enhanced at times of illness. If the hypothesis is correct the outcome of this study could have direct implications for how Dravet patients are treated when unwell.
The study, which is costing £41,078, is jointly funded by Dravet Syndrome UK and Epilepsy Action. Dravet Syndrome UK Chairperson Marie Baker states “we are absolutely delighted to be collaborating with Epilepsy Action on this project, particularly as the funds from Epilepsy Action were raised by Team Max in memory of Max Miller, who tragically passed away as a result of SUDEP when he was just 2 years old. Max had a diagnosis of Dravet syndrome and his Mum, Gail, and Team Max have worked tirelessly raising money for research in his memory”.
Dravet Syndrome UK would also like to recognise committee member Annabel Hughes and her husband Haydn, whose large donation at the end of 2012 has provided the funding for this project. Annabel and Haydn work incredibly hard throughout the year hosting a number of fundraising events, which enable them to make a significant donation to the charity.