RESEARCH

We asked people on our Instagram who have been affected by epilepsy why epilepsy research is important to them.

Here are a selection of the responses:

"This information would help massively in my day to day life." @shannenlyness
"We have advanced so much, but we have so much more work to be done." @mara.laugh

"Finding a cure is the overall goal but understanding how to best support and help people cope with their epilepsy is also important." - anonymous

"Reaching seizure control and living a healthy and happy life with epilepsy should be the norm, not the exception." - anonymous

PARTICIPATE IN RESEARCH:

Below we have listed a selection of current epilepsy related research studies.

If you fit the criteria, and wish to take part, follow the link or contact the researcher(s).

How can we use mobile technology to measure and manage health?

Researchers based at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, are recruiting people with a diagnosis of epilepsy to take part in a study that is part of RADAR-CNS, an international research project. RADAR-CNS is developing new ways of measuring seizures and other symptoms associated with epilepsy using wearable devices and smartphone technology. It aims to improve patients’ quality of life, and to potentially change how this condition is managed.

About this project:

There are important signs of seizures and the researchers are exploring how easy or difficult it is for people who have a diagnosis of epilepsy to use a smartphone and wrist-worn activity monitor to track heartrate, activity, cognition etc. The researchers will examine how changes in these patterns or behaviours might correlate with seizure activity. In the future, by monitoring this type of information, it might be possible to detect seizures and or other symptoms associated with epilepsy.

However, engagement with wearing mobile technology is key. Whether you use mobile technology or not, we need your help to understand what is important to people affected by epilepsy.

We would like to ask you to complete a short (no longer than 30 minutes) online survey and task about your experience of epilepsy and your thoughts about using mobile health technology and wearable tools (e.g. smartwatches, fitness trackers) to help measure and manage your health. You will also be asked to complete a task where you make choices about the type of mobile health technology you would be most willing to use.

You are eligible to participate in this study if you meet all of the following criteria:

Over the age of 18
Speak fluent English
Live in the UK
Have a diagnosis of epilepsy

For more information or to register your interest in this study, please contact Dr Sara Simblett at: sara.simblett@kcl.ac.uk

For more general information see www.radar-cns.org.

Understanding the Care Needs of People with Epilepsy

Study Title: Assessing baseline factors, critical events and fatigue in long term neurological conditions

This study is being conducted by a research team based at University Hospital Southampton. It is led by Sarah Fearn, a Senior Research Fellow. The chief investigator is Dr Chris Kipps, a consultant neurologist.

About this project:

"Many long term conditions, such as epilepsy, have an impact on a person’s quality of life. Their need for help and care can change at different times. This might mean that the resources they need to help them are not always available at the right time.

We are keen to identify the care needs of people with epilepsy, committed to improve the support given to patients and caregivers, by valuing the experience of patients, caregivers and former caregivers."

Participants will be asked to complete two short surveys, either online, on paper or over the telephone. Each survey will usually take less than 20 minutes.

The first survey asks about the things that you feel affect the amount of care you, or a person with epilepsy you care for, needs. The second survey asks about the impact of fatigue for people with epilepsy.

You are eligible to participate in this study if you meet all of the following criteria:

Over the age of 18
Live in the UK
Have a diagnosis of epilepsy or care for someone with a diagnosis of epilepsy

To find out more and/or receive a participant information sheet, please contact Sarah Fearn: S.Fearn@soton.ac.uk

Alternatively, follow the survey link here: https://www.isurvey.soton.ac.uk/25611

Conference Collaborations

Upcoming

Euro Neurology and Neurosurgery Congress.

Event Date & Time: March 26th - March 27th 2020.

Event Location: Paris, France.

For more details, visit the conference's website here.

Earlier this year we also collaborated with the 14th International Conference on Neurology, Neuroscience and Neuromuscular Disorders.

Theme: Scientific advancements and explorations in the field of Neurology and Neuroscience.

Event Date & Time: June 17th-18th 2019.

Event Location: Radisson Narita, Tokyo, Japan.

For more details, visit the conference's website here.

Understanding the Care Needs of People with Epilepsy

Study Title: Assessing baseline factors, critical events and fatigue in long term neurological conditions

About this project:

Participants will be asked to complete two short surveys, either online, on paper or over the telephone. Each survey will usually take less than 20 minutes.

You are eligible to participate in this study if you meet all of the following criteria:

Over the age of 18
Live in the UK
Have a diagnosis of epilepsy or care for someone with a diagnosis of epilepsy

To find out more and/or receive a participant information sheet, please contact Sarah Fearn: S.Fearn@soton.ac.uk

Alternatively, follow the survey link here: https://www.isurvey.soton.ac.uk/25611

Research Groups

The Muir Maxwell Epilepsy Centre - 'A centre based at the University of Edinburgh which aims to investigate the causes of childhood epilepsy and to develop new treatments and publics health strategies.'

To find out more about their research (including their clinical research, pre-clinical research, publications and working and learning opportunities), see here.

Research News: UK Epilepsy Charities

Below are links to find out more about the brilliant work that UK epilepsy charities do within research. This includes their recent research aims, updates and reports, as well as plenty opportunities for people affected by epilepsy to get involved with epilepsy research.

For news on international advances in epilepsy research visit 'Medical News Today', here (frequently updated site posting latest epilepsy research findings from prestigious universities and journals throughout the world).

Clinical Trials

UK Clinical Trials Gateway link (National Institute for Health Research): https://www.ukctg.nihr.ac.uk/
US Clinical Trials link (U.S. National Library of Medicine) https://www.clinicaltrials.gov
Australia Clinical Trials (National Health and Medical Research Council) https://www.australianclinicaltrials.gov.au/

Here you can search for current clinical trials happening in the UK/US/Australia including epilepsy related trials.

Often you will need to be by your epilepsy specialist/GP to take part, except there is more information on taking part on the website.

Clinical research is an increasingly global endeavour. For a full list of countries currently conducting clinical trials visit this website: https://www.hhs.gov/ohrp/international/clinical-trial-registries/index.html

Brain and Tissue Bank:

"The Brain and Tissue Bank is a collaborative project between Epilepsy Society and University College London (UCL) and is based at the UCL Institute of Neurology. We need brain and other tissue donated by people with and without epilepsy so researchers are able to compare differences."

For more information click here.

Share your research with us!

If you have recently published epilepsy research and would like it to be shared with our followers, please contact get in touch by emailing us at epilepsypositivity@outlook.com

We thank our volunteer Becky Gregory for her guidance and support creating this page.

"Seizing positivity over seizures, one brainwave at a time" - patient voice