Epilepsy society research

A brief overviewTrevor Hutton

Regional Manager South East

Epilepsy Society Research – The history

• Epilepsy Society is the largest epilepsy charity in the UK.

• Formed 1892 in Chalfont, Buckinghamshire

Chalfont 1892 and 2012

Day One Training 3

In the beginning

• 1880s Fathers of neurology – Hughlings Jackson and William Gowers

» formed “industrial home for epileptics”» Diaries first used to record seizures.

• 1910-64 No research• 1965-72 Clinical trials/pharmacological

research – Alan Richens» First research around side effects

Moving on

• 1972 Specialist assessment centre opened at Chalfont.

• 1973-95 Research orientated medical director appointed

» Assessment unit flourishing» Research fellow appointed» epidemiological research» MRI unit opened

Late 20th Century

• 1996• Epidemiology• Genetics• Imaging• Health Service research• Pharmacology• Surgical treatment• Psychology

Epilepsy Society Research Mission 2013

• Epilepsy Society is at the forefront of medical research into epilepsy. Our work aims to:

• clarify the underlying causes of epilepsy • advance the treatment and rehabilitation of those with

epilepsy • identify and investigate the healthcare needs of, and

services for, people with epilepsy and their carers

Epilepsy Society Research 2013

• We have extensive expertise in brain imaging, genetics, pharmacology, epidemiology and psychology and work in partnership with the National Hospital for Neurology and Neurosurgery and the Institute of Neurology. We are recognised as a centre for excellence by the World Health Organization (WHO).

2013

• Genetics– Research into dose related responses– First genome-wide study

• Imaging– 1st MRI unit for epilepsy in Europe

• And more ………………

Epilepsy Society 2013

• Epilepsy Society Research Centre• £3.4M state of art facilities

• MRI

Epilepsy Society Research Centre

Research – Genomic Medicine

• The diagnosis and treatment of people based on their DNA sequence (or genome)– Mapping of human genome (understanding of the impact

of mutations across multiple genes)

• Gateway to – Earlier diagnosis– More targeted treatments

Research – Genomic Medicine

• Collecting thousands of blood samples– (previously sent to America, Beijing, Iceland for DNA

sequencing)

• UK’s only DNA sequencer dedicated to epilepsy– Low cost/on site– Adjust/modify equipment

• Sequence results + MRI + EEG + History

Research – Genomic Medicine

• From this:– Build picture to find cause of epilepsy– Identify mutations– Determine response to Anti Epileptic drugs– Lead to drug advancements

• 5 years: will begin to deliver individualised treatment based on persons genome

• 10 years: DNA sequenced at Chalfont as routine

Research - surgery

• Temporal lobe epilepsy – most common form of focal epilepsy

• 70% of people undergoing surgery achieve seizure freedom +++

• Brain imaging reduces possibility of side effects – memory/speech

• Mental health?

Research - Epilepsy Navigator

Surgery:fMRI reduces risks

• 1000 pwe p.a identified as being suitable for surgery• 50% undergo treatment• Research into psychological impact/memory support

strategies etc all important• NOW: “SMART SURGERY” Epilepsy Navigator

Research - Epilepsy Navigator

• What is it?– Interactive 3D neuronavigation system.– Simultaneous display of

• Functions• Lesions• Arteries• Veins• Blood vessels• White matter tracts

Research - Epilepsy Navigator

• How will it help?– Plan best approach and where to place recording

electrodes– Remove part of brain giving rise to seizures without

damage to vital structures

More research

• Diffusion tensor imaging (DTI) with tractography– Looking at white matter tracts– Routine clinical tool in 3 to 4 years

• Magnetoencephalography (MEG)– Brain scanning tool that maps and records tiny magnetic

fields (limited availability)

• Donated brains and brain tissue

Keep in touch - research

• Research membership– our annual research review – a certificate of membership and the special research

associate membership badge - prestigious, discrete token of membership

– all the benefits of being an associate member – an opportunity to attend specialised research seminars

and conferences

• £50 per year - £32.50 goes to research

We also undertake varied medical research programmes. Our current programmes include:

• The genetics of treatment and the Ketogenic Diet

The Ketogenic Diet is a form of treatment of epilepsy for those who have not responded to traditional anti-epileptic drugs; it is a high-fat, low carbohydrate, controlled protein diet that has been used since the 1920s for the treatment of epilepsy.

Usually the body uses glucose from carbohydrates for its energy source. In the Ketogenic Diet the body’s energy source comes from using fats instead of glucose.

Some children have done extremely well on this diet and so we aim to identify the genetic factors associated with their positive response in order to replicate these factors in a synthetic form that is not dependent on the diet.

Other services at the Society

• The society not only offers new research it is also involved in three other areas: Regional and Educational services including new technology. Medical services and residential.

join our digital community: www.epilepsysociety.org.uk/digital

Day 1 training 9

Regional and Educational services

The Society now has an extensive range of Fact sheets of information

leaflets

Information Volunteers

• We operate across the UK with over 200 trained Volunteers working in clinics both dispensing and guiding patients around information available .

Schools programme

• We have now developed our schools awareness programme which has so far reached out to over 35000 pupils. We have also reached out to special needs schools. Here in the south I am now regularly running schools training sessions for staff groups.

Specialist Trainers

• Social Care and Nurse trainers are available across the U.K. Working in a variety of settings Broadening awareness and training in rescue medication.

Residential Care

• Provision of 89 beds in new Homes with nursing stations. Providing care for those with high depend needs and Epilepsy.

HELPLINE

• Our dedicated helpline has a service running daily 10 to 4. For any one who is seeking Information.

The Epilepsy Society and its Tech Toolkit

Trevor HuttonSouth East Regional Manager

Epilepsy Society – iPhone and Android App

•Originally launched in 2010 for iPhone

•Developed for Android in 2011 by a volunteer

•Has been downloaded over 15,000 times since its launch

•Has featured on BBC World News

The epilepsy toolkit

•Seizure diary – to help make recording seizures quicker and easier to access•Medication advice – covers some frequently asked questions regarding medication and the benefits of taking prescribed medication•First aid – basic information to help someone if they are having a seizure•Medication reminder – an alarm to remind the user to take their medication

Epilepsy Society – ‘Appy to see you!

• More and more people are now accessing the internet through their mobile phone

• Smartphones have allowed the development of a wide range of Apps, from relatively mainstream ones like weather apps to more niche ones

• Our App has been designed to try and give people with epilepsy more information and assistance with their epilepsy

• “Love it so helpful and love my epilepsy diary also. Helps keep track of important events and info and always available to you and doctors and so on”

APPreciate your time

• Our App is available for Android and iPhone/iPad, just search for ‘epilepsy society’ on your app shop

• Visit http://www.youtube.com/epilepsysociety for demonstration videos of our App

• Always looking for ideas and feedback from our App, email Android.Support@epilepsysociety.org.uk